What a week it has been - free of needles, medicines, bad food, iv's and long nights. I am so thankful to be out of the hospital after 2 long months! I am thankful that I have had Robert to stand beside me and also guide me through this difficult process.
We have been staying in an apartment a few minutes away from all of the hospital facilities. Although a little outdated, the apartment is very comfortable and clean.
Physically, I am getting stronger everyday. Today, we purchased a cane, because I think in a few weeks, I will not need the walker at all. Emotionally, I remain to be pretty upbeat. Often, I get frustrated with the bureaucracy that the medical establishments make us go through, but I've only had to deal with it for a week. Robert and my parents have had to deal with it for over 2 months! I am working on just letting it go. There is nothing I can do about it.
Again I just want to thank everyone for all they have done for Robert and I during this difficult time. You know we will bounce back, but in the mean time we are so thankful for all of the support!
Tuesday, December 29, 2009
Monday, December 28, 2009
New Routine & Waiting
It has been 6 days since Tyler left the hospital. No alarms, no scares. Maybe one scare when Tyler hit the self-test button by accident in the middle of the night and all the alarms started testing. Neither of us panicked. I got up to check but before I got there Tyler had already figured out what had happened. We both went right back to sleep. Okay, maybe a few more scares when 6am, 9am, 2pm, 5pm, or 10pm comes around and the realization hits that medicine needs to be taken.
We went in for blood work Monday and there is a problem with his INR ratio which measures the coagulation properties of his blood. It is at 1.4 and I believe they would like it to be around 2.0. When he was still at the hospital it went down to 1.6 and they gave him a blood transfusion of about 2.5 pints. We don't want to do that again. Tyler was asked if he had been eating salads over the past couple of days. That is when we became aware that we shouldn't have been eating foods high in Vitamin K, like green vegetables, as it reacts to the Coumadin (blood thinner) medication. I say "aware" because we may have been told during the rush of information and forgot. So, no eating the good stuff anymore, like vegetables. We've looked up stuff high in Vitamin K and will be avoiding these.
We took a 40 minute walk outside of the apartment Sunday since it was a nice sunny day in the upper 60s. I guess doing the initial recovery in Houston isn't such a bad thing after all. Could be in Denver with snow and temperatures in just the 20s. Tyler is walking further and a little faster and better.
Wednesday we go to "clinic" which is the LVAD clinic appointment we will have every week. This is to make sure things still look good. Next week cardiac therapy begins.
I have run Tyler around on errands and he tends to get a bit car sick. I'm sure it has everything to do with the medicine and nothing to do with my driving.
We are trying to adjust to a new routine. Morning is made up of taking pills at 6am (then more sleep), then logging vitals like weight and temperature. Also running self-tests on the system controller and power module. Then trying to figure out the best way for Tyler to take a shower. Then the dressing change. Then pills at 9am. Figuring out what needs to be done that day....grocery store, set up doctor's appointments, PT exercises, Robert's work, dealing with Social Security forms, and more. Each day we get a little better at the new routine that will be with us until the heart transplant (which will then bring another different routine).
We are also now in a waiting period. Waiting to see if things go well during the next few weeks. Waiting to see if the transfer of care to Colorado will happen. Waiting to see when we can pack up the car and move to Denver. Hoping that we don't get too grouchy with each other.
But hopefully the days will become more routine even if it is still a weird.
Robert
We went in for blood work Monday and there is a problem with his INR ratio which measures the coagulation properties of his blood. It is at 1.4 and I believe they would like it to be around 2.0. When he was still at the hospital it went down to 1.6 and they gave him a blood transfusion of about 2.5 pints. We don't want to do that again. Tyler was asked if he had been eating salads over the past couple of days. That is when we became aware that we shouldn't have been eating foods high in Vitamin K, like green vegetables, as it reacts to the Coumadin (blood thinner) medication. I say "aware" because we may have been told during the rush of information and forgot. So, no eating the good stuff anymore, like vegetables. We've looked up stuff high in Vitamin K and will be avoiding these.
We took a 40 minute walk outside of the apartment Sunday since it was a nice sunny day in the upper 60s. I guess doing the initial recovery in Houston isn't such a bad thing after all. Could be in Denver with snow and temperatures in just the 20s. Tyler is walking further and a little faster and better.
Wednesday we go to "clinic" which is the LVAD clinic appointment we will have every week. This is to make sure things still look good. Next week cardiac therapy begins.
I have run Tyler around on errands and he tends to get a bit car sick. I'm sure it has everything to do with the medicine and nothing to do with my driving.
We are trying to adjust to a new routine. Morning is made up of taking pills at 6am (then more sleep), then logging vitals like weight and temperature. Also running self-tests on the system controller and power module. Then trying to figure out the best way for Tyler to take a shower. Then the dressing change. Then pills at 9am. Figuring out what needs to be done that day....grocery store, set up doctor's appointments, PT exercises, Robert's work, dealing with Social Security forms, and more. Each day we get a little better at the new routine that will be with us until the heart transplant (which will then bring another different routine).
We are also now in a waiting period. Waiting to see if things go well during the next few weeks. Waiting to see if the transfer of care to Colorado will happen. Waiting to see when we can pack up the car and move to Denver. Hoping that we don't get too grouchy with each other.
But hopefully the days will become more routine even if it is still a weird.
Robert
Saturday, December 26, 2009
Halfway House
Tyler was discharged by the doctor from the hospital about 9:30am Wednesday.
We left about 12:30pm once all the paperwork was done and transportation (the hospital wheelchair ride) came to get Tyler. We almost got into trouble after packing up our stuff and just trying to leave. We just desperately wanted to get out of the hospital after 8 weeks of being there. Once we got to the main lobby I was asked to go get the car (from the garage) and then I could pick up Tyler. I had to explain that since the transport person wasn't trained with LVADs, Tyler had to stay with me. So Tyler and I walked to the garage again to get the car. We pulled up to the front entrance to get our stuff including the LVAD equipment (battery charger and power module). The transport person had left so I just went in and grabbed the wheelchair cart. Another person then started accosting me about "where is the patient?" I was loosing my temper and just said "in the car!" and continued to roll our stuff out. She was obviously freaked out a bit since this is not hospital policy and kept following me asking "where is the patient". I finally stopped and explained again that I can't leave the "patient" and that he was IN...THE...CAR. I was basically saying..."LEAVE ME ALONE". Felt almost like a prison break.
Before we left Tyler's hospital room, the doctor and social worker both commented that they had been in touch with the University of Colorado Hospital and were exchanging information. The doctor mentioned that we should be able to do about 4-5 clinic visits in Houston and if all went well should be able to transfer care and transplant lists, and finally get home. That would put us moving back home at the beginning of February 2010. At that time Tyler would have been away from the house for almost 3 1/2 months.
We then proceeded to get some lunch and go to the pharmacy to fill his prescriptions. We waited about an hour and a half at the pharmacy to get 14 prescriptions filled. This was cutting it close since Tyler needed to take two of the prescriptions right away. Once we finished at the pharmacy we went back to the apartment to unload everything we brought from the hospital. Then we went to the grocery store. Tyler had to stop a couple of times and rest at the grocery store while I was finishing up.
We then had to figure out how to make sure we were dispensing the right medicines at the right times, how to sleep (since Tyler can only sleep on his back or left side), and how to take a shower with all the LVAD equipment since it can't get wet.
While it is good to be out of the hospital and in our "halfway house", we now are adapting to another "chapter" of this experience. We will miss the nurses, PCA's, and staff a lot! As the days go by we are figuring out how to deal with everything step by step. It is amazing how the "little" things have become "big" things now. Just going to the grocery store takes a lot of thought and preparation.
The days in Houston will become "normal". Logging all the medicines taken and equipment settings, doing physical therapy exercises, and running errands. Janet brought over treats Thursday night and we took over Tyler's spaghetti sauce Friday night. Tyler was able to ascend the stairs to Janet's apartment, although slowly, but is still making progress walking around. I also called Mitzy Friday night and she has been able to go back to her house north of Houston. Her husband, Ben, was moved to a clinic near their house on Tuesday. Interesting that Mitzy and I arrived at St. Luke's the same night and for almost the same exact duration.
I have posted two links about the LVAD so people can get a glimpse of what it looks like and a video of a woman living with the LVAD.
Living with an LVAD
HeartMate II Video Clip
Now we hopefully can have successful clinic visits and start looking towards getting home. We are trying to determine if we are going to drive or fly home. Flying would be faster and would get us from big city to big city. But we would have to carry his LVAD equipment onto the plane and that will become a hassle. Also, we currently have Tyler's car in Houston and would have to figure out how to get that back to Denver so we would also have it there. Driving is simpler logistically, but means 20 hours (split over two or more days) through not the most populated areas of the county. I figure we made it from Cozumel to Houston unexpectedly so we should be able to deal with the unexpected.
Robert
We left about 12:30pm once all the paperwork was done and transportation (the hospital wheelchair ride) came to get Tyler. We almost got into trouble after packing up our stuff and just trying to leave. We just desperately wanted to get out of the hospital after 8 weeks of being there. Once we got to the main lobby I was asked to go get the car (from the garage) and then I could pick up Tyler. I had to explain that since the transport person wasn't trained with LVADs, Tyler had to stay with me. So Tyler and I walked to the garage again to get the car. We pulled up to the front entrance to get our stuff including the LVAD equipment (battery charger and power module). The transport person had left so I just went in and grabbed the wheelchair cart. Another person then started accosting me about "where is the patient?" I was loosing my temper and just said "in the car!" and continued to roll our stuff out. She was obviously freaked out a bit since this is not hospital policy and kept following me asking "where is the patient". I finally stopped and explained again that I can't leave the "patient" and that he was IN...THE...CAR. I was basically saying..."LEAVE ME ALONE". Felt almost like a prison break.
Before we left Tyler's hospital room, the doctor and social worker both commented that they had been in touch with the University of Colorado Hospital and were exchanging information. The doctor mentioned that we should be able to do about 4-5 clinic visits in Houston and if all went well should be able to transfer care and transplant lists, and finally get home. That would put us moving back home at the beginning of February 2010. At that time Tyler would have been away from the house for almost 3 1/2 months.
We then proceeded to get some lunch and go to the pharmacy to fill his prescriptions. We waited about an hour and a half at the pharmacy to get 14 prescriptions filled. This was cutting it close since Tyler needed to take two of the prescriptions right away. Once we finished at the pharmacy we went back to the apartment to unload everything we brought from the hospital. Then we went to the grocery store. Tyler had to stop a couple of times and rest at the grocery store while I was finishing up.
We then had to figure out how to make sure we were dispensing the right medicines at the right times, how to sleep (since Tyler can only sleep on his back or left side), and how to take a shower with all the LVAD equipment since it can't get wet.
While it is good to be out of the hospital and in our "halfway house", we now are adapting to another "chapter" of this experience. We will miss the nurses, PCA's, and staff a lot! As the days go by we are figuring out how to deal with everything step by step. It is amazing how the "little" things have become "big" things now. Just going to the grocery store takes a lot of thought and preparation.
The days in Houston will become "normal". Logging all the medicines taken and equipment settings, doing physical therapy exercises, and running errands. Janet brought over treats Thursday night and we took over Tyler's spaghetti sauce Friday night. Tyler was able to ascend the stairs to Janet's apartment, although slowly, but is still making progress walking around. I also called Mitzy Friday night and she has been able to go back to her house north of Houston. Her husband, Ben, was moved to a clinic near their house on Tuesday. Interesting that Mitzy and I arrived at St. Luke's the same night and for almost the same exact duration.
I have posted two links about the LVAD so people can get a glimpse of what it looks like and a video of a woman living with the LVAD.
Living with an LVAD
HeartMate II Video Clip
Now we hopefully can have successful clinic visits and start looking towards getting home. We are trying to determine if we are going to drive or fly home. Flying would be faster and would get us from big city to big city. But we would have to carry his LVAD equipment onto the plane and that will become a hassle. Also, we currently have Tyler's car in Houston and would have to figure out how to get that back to Denver so we would also have it there. Driving is simpler logistically, but means 20 hours (split over two or more days) through not the most populated areas of the county. I figure we made it from Cozumel to Houston unexpectedly so we should be able to deal with the unexpected.
Robert
Wednesday, December 23, 2009
I'll be home for Christmas - kinda
Tyler is still experiencing a sharp electrical type pain in his right leg but is able to move his foot more. He is using a cane or walker to move around but at least he is mobile. He continues to cut back on the pain medicine, but still gets waves of nausea every now and then.
I got back to Houston and went directly to the hospital since Tyler was holding the apartment keys hostage. Thank goodness because I had forgotten why I was in Houston. When I got to the hospital Tyler was having an echo-cardiogram done by order of Dr. Frasier. Dr. Frasier came in and adjusted Tyler's pump to see the effect while viewing the echo. He settled on 9400 RPM and again made a comment about maybe Tyler's heart could get some R&R and Tyler wouldn't need a transplant. Tyler thinks he can wrap his head around that. I think I can also!
After adjusting the pump and the echo, Tyler and I were going to go to dinner outside of the hospital. Before we could go, it dawned on me that they only adjusted the primary controller to 9400 and not the backup controller. So we waited for just a little bit to get that fixed. Dinner was good. Table with chairs for both of us. No candlelight, but a waiter. Salad came out first, then the main meal. A pleasant, non-hospital smell...could there be life outside of the hospital?
A special thanks to his mom and sister for staying with Tyler. They didn't necessarily come to Houston just so I could take a trip back to Denver...I think they may have wanted to see Tyler also. It was good to have the chance to go back to Denver and to come back to a cleaner apartment! They also left a really nice card for us. Weird circumstances but it has been good to really get to know them. They have been wonderful to me.
Tuesday was our 8 hour pass day. In the morning we asked about a handicap sticker for the car. The reaction was negative at first...."the doctor doesn't really like to issue handicap stickers....." Okay, okay. Can anyone look at more than just the top or bottom half of Tyler. Can anyone notice the walker, cane, and wheelchair in the room? Ay dios mio!
Also, a different doctor came in who didn't know about the Fentanyl patch Tyler is wearing. Once he looked, he noticed it was a 50mg patch and said that Tyler was going to have to be weened off of it. Tyler said "fine, as long as I don't have to stay in the hospital during the weening process." Otherwise I think he was just going to pull it off and say goodbye.
Tyler used his walker to go from his hospital room, all the way through the hospital, and through the garage to the car. It is a long walk but he did fine. Only once, stepping off a curb, did his left knee give him trouble. We went to the apartment and had lunch. Then watched a little bit of a movie before Tyler got tired and wanted to take a nap. After the nap we went to get him a hair cut, which he thoroughly enjoyed (especially getting his hair washed for real after two months). Finally something normal and usually inconsequential but yet another big step in recovery. After the hair-cut we went back to the apartment and hung out until about 7pm. Janet brought over some cookies and both of them gave me grief since Tyler had to get up and answer the door for her. I just considered that occupational therapy.....right?
Once we got back to the hospital the nurse tried to give him a 50mg Fentanyl patch, even though he was supposed to be weening off of Fentanyl. Both of us protested and finally they were able to bring him a 25mg patch.
Now the next big step (Christmas miracle?) is actually discharging him from the hospital, which we are doing today. I'm glad because I won't have to run back and forth to the hospital. Tyler, for some reason, is chomping at the bit to get out. We aren't home yet, but a least out of the hospital. Can anyone really believe it has been 8 1/2 weeks? So long, yet so fast. Maybe October 25, 2009 will finally be over soon! (Soon being a relative term these days).
Robert
I got back to Houston and went directly to the hospital since Tyler was holding the apartment keys hostage. Thank goodness because I had forgotten why I was in Houston. When I got to the hospital Tyler was having an echo-cardiogram done by order of Dr. Frasier. Dr. Frasier came in and adjusted Tyler's pump to see the effect while viewing the echo. He settled on 9400 RPM and again made a comment about maybe Tyler's heart could get some R&R and Tyler wouldn't need a transplant. Tyler thinks he can wrap his head around that. I think I can also!
After adjusting the pump and the echo, Tyler and I were going to go to dinner outside of the hospital. Before we could go, it dawned on me that they only adjusted the primary controller to 9400 and not the backup controller. So we waited for just a little bit to get that fixed. Dinner was good. Table with chairs for both of us. No candlelight, but a waiter. Salad came out first, then the main meal. A pleasant, non-hospital smell...could there be life outside of the hospital?
A special thanks to his mom and sister for staying with Tyler. They didn't necessarily come to Houston just so I could take a trip back to Denver...I think they may have wanted to see Tyler also. It was good to have the chance to go back to Denver and to come back to a cleaner apartment! They also left a really nice card for us. Weird circumstances but it has been good to really get to know them. They have been wonderful to me.
Tuesday was our 8 hour pass day. In the morning we asked about a handicap sticker for the car. The reaction was negative at first...."the doctor doesn't really like to issue handicap stickers....." Okay, okay. Can anyone look at more than just the top or bottom half of Tyler. Can anyone notice the walker, cane, and wheelchair in the room? Ay dios mio!
Also, a different doctor came in who didn't know about the Fentanyl patch Tyler is wearing. Once he looked, he noticed it was a 50mg patch and said that Tyler was going to have to be weened off of it. Tyler said "fine, as long as I don't have to stay in the hospital during the weening process." Otherwise I think he was just going to pull it off and say goodbye.
Tyler used his walker to go from his hospital room, all the way through the hospital, and through the garage to the car. It is a long walk but he did fine. Only once, stepping off a curb, did his left knee give him trouble. We went to the apartment and had lunch. Then watched a little bit of a movie before Tyler got tired and wanted to take a nap. After the nap we went to get him a hair cut, which he thoroughly enjoyed (especially getting his hair washed for real after two months). Finally something normal and usually inconsequential but yet another big step in recovery. After the hair-cut we went back to the apartment and hung out until about 7pm. Janet brought over some cookies and both of them gave me grief since Tyler had to get up and answer the door for her. I just considered that occupational therapy.....right?
Once we got back to the hospital the nurse tried to give him a 50mg Fentanyl patch, even though he was supposed to be weening off of Fentanyl. Both of us protested and finally they were able to bring him a 25mg patch.
Now the next big step (Christmas miracle?) is actually discharging him from the hospital, which we are doing today. I'm glad because I won't have to run back and forth to the hospital. Tyler, for some reason, is chomping at the bit to get out. We aren't home yet, but a least out of the hospital. Can anyone really believe it has been 8 1/2 weeks? So long, yet so fast. Maybe October 25, 2009 will finally be over soon! (Soon being a relative term these days).
Robert
Sunday, December 20, 2009
"ITS MY TURN"
In response to the most recent posting...if my partner would have given me access to the passwords(he's become a little more controlling these days)then maybe I would have had an opportunity to write more(but I guess this blog is his "baby" - and me relinquishing some control could be a good thing). Also, I am somewhat intimidated by his ability to write creatively - since everyone seems so impressed by his writing style.
As you all know, I will be able to get out of the hospital on Wednesday and then Robert and I get to enjoy our Houston apartment together for 5 weeks(can't wait to be in a home). Although Robert says 1-2 months, I am going to be adamant about 5 weeks - because being out of the hospital is nice, but being in our own home in Denver will be much better! Although it's been a really long haul staying in the hospital for this long, I couldn't have asked for a more amazing nursing staff...God definitely brought me to the best place and I'm going to miss them (not too much though).
I also wanted to send out a big "Thank-you" to anyone and everyone who had anything to do with the fundraiser held at Rock Bottom - I was overwhelmed by the out-pouring of love and generosity from all of our friends. Truly, a "thank-you" will never be enough!
Cheers for now,
Tyler
As you all know, I will be able to get out of the hospital on Wednesday and then Robert and I get to enjoy our Houston apartment together for 5 weeks(can't wait to be in a home). Although Robert says 1-2 months, I am going to be adamant about 5 weeks - because being out of the hospital is nice, but being in our own home in Denver will be much better! Although it's been a really long haul staying in the hospital for this long, I couldn't have asked for a more amazing nursing staff...God definitely brought me to the best place and I'm going to miss them (not too much though).
I also wanted to send out a big "Thank-you" to anyone and everyone who had anything to do with the fundraiser held at Rock Bottom - I was overwhelmed by the out-pouring of love and generosity from all of our friends. Truly, a "thank-you" will never be enough!
Cheers for now,
Tyler
Saturday, December 19, 2009
Home Sick
Sorry for the delay....everything is okay. Didn't mean to worry anyone....just a bit tired. Besides, I thought someone (who shall remain nameless) was going to make another post. He may be dealing with some other important things. Or maybe he is just a slacker. Ha.
Tyler is still hanging in there. Still working on getting his legs stronger. He now has a knee brace on his left leg due to his knee buckling. His right leg, the one that had surgery, is still healing and still giving off a lot of pain. Seems like his chest is healing just fine. They are trying to work on the pain meds, but it appears the Darvaset makes him nauseous. But all in all....holding steady for now.
I have been able to take Tyler out of the hospital in a wheel chair a couple of times now. We didn't go to far from the hospital, but was able to go to Starbucks and wheel around a bit. During one of the excursions Tyler said "Can you believe I'm waiting on a hear?". My answer "No". It is still surreal.
The LVAD coordinator came to Tyler's room Wednesday and went over discharge procedures with us. Yes, I said "discharge". If everything holds steady we should be able to leave the hospital next Wednesday! Finally! Of course the coordinator got frustrated trying to talk to Tyler and me. She was giving us a knowledge test to make sure we knew the important things about the LVAD and life outside the hospital (supplies needed, etc.). Tyler kept peppering her with questions and changing topics and I was being a smart-ass with my answers to her questions. "How long does the internal battery on the power module last if there is a loss of power?" My answer: "Well, if we go by the manual that we were told to read, 30 minutes. If we go by what we have been told, 15 minutes. Guess it doesn't really matter as we will immediately switch to batteries and find power somewhere else." She counted our excursion on Wednesday as our 4 hour pass and when I get back to Houston, I'll take Tyler out for 8 hours and we'll be done. The coordinator was very nice in that she will be out of town next week and wanted to make sure she had signed off so we could be out of the hospital before Christmas.
His mom and sister flew into town on Wednesday. His mom just popped into Tyler's hospital room unannounced. At the time Tyler and Temple were standing up talking and it was great to see his mom's reaction to that. The last time she saw Tyler he was barely conscious and unable to talk. They are now entertaining Tyler (okay, helping Tyler), while I take a trip back to Denver. I'll be able to do some business, get some things for Tyler, and deal with the mounds of bills and statements at home. We will still have about another month or two to be in Houston but at least we are taking another positive step. Still working with the University of Colorado Hospital in figuring out how to transfer care back to Denver, so our 1 to 2 months doesn't turn into 6 to 8 months or more in Houston. Once we are discharged, we have once a week clinic appointments (to check on the pump, etc.) for about 4 weeks and then the appointments become once every two weeks for about another 4 times. Depends on how Tyler is doing as to how long this will take. He is also scheduling out-patient cardiac rehab during this time so he can get stronger.
Being in the house without Tyler is weird. I've had a couple of moments where I expected Tyler to be here or to come back from a client appointment. Tyler is homesick but said he was glad I went to Denver to check on things. Most, if not all, of the other LVAD patients have been discharged so Tyler doesn't have his buddies to talk to when walking around the floor. Kinda lonely.
We still have a long way to go and that is not even including waiting for a heart transplant. Hopefully in the next two months he will become active again on the transplant list. Although...the nurses are now able to take his pulse without using the Doppler method. Hopefully a good sign that his left ventricle is pumping better. Fingers crossed!
Robert
Tyler is still hanging in there. Still working on getting his legs stronger. He now has a knee brace on his left leg due to his knee buckling. His right leg, the one that had surgery, is still healing and still giving off a lot of pain. Seems like his chest is healing just fine. They are trying to work on the pain meds, but it appears the Darvaset makes him nauseous. But all in all....holding steady for now.
I have been able to take Tyler out of the hospital in a wheel chair a couple of times now. We didn't go to far from the hospital, but was able to go to Starbucks and wheel around a bit. During one of the excursions Tyler said "Can you believe I'm waiting on a hear?". My answer "No". It is still surreal.
The LVAD coordinator came to Tyler's room Wednesday and went over discharge procedures with us. Yes, I said "discharge". If everything holds steady we should be able to leave the hospital next Wednesday! Finally! Of course the coordinator got frustrated trying to talk to Tyler and me. She was giving us a knowledge test to make sure we knew the important things about the LVAD and life outside the hospital (supplies needed, etc.). Tyler kept peppering her with questions and changing topics and I was being a smart-ass with my answers to her questions. "How long does the internal battery on the power module last if there is a loss of power?" My answer: "Well, if we go by the manual that we were told to read, 30 minutes. If we go by what we have been told, 15 minutes. Guess it doesn't really matter as we will immediately switch to batteries and find power somewhere else." She counted our excursion on Wednesday as our 4 hour pass and when I get back to Houston, I'll take Tyler out for 8 hours and we'll be done. The coordinator was very nice in that she will be out of town next week and wanted to make sure she had signed off so we could be out of the hospital before Christmas.
His mom and sister flew into town on Wednesday. His mom just popped into Tyler's hospital room unannounced. At the time Tyler and Temple were standing up talking and it was great to see his mom's reaction to that. The last time she saw Tyler he was barely conscious and unable to talk. They are now entertaining Tyler (okay, helping Tyler), while I take a trip back to Denver. I'll be able to do some business, get some things for Tyler, and deal with the mounds of bills and statements at home. We will still have about another month or two to be in Houston but at least we are taking another positive step. Still working with the University of Colorado Hospital in figuring out how to transfer care back to Denver, so our 1 to 2 months doesn't turn into 6 to 8 months or more in Houston. Once we are discharged, we have once a week clinic appointments (to check on the pump, etc.) for about 4 weeks and then the appointments become once every two weeks for about another 4 times. Depends on how Tyler is doing as to how long this will take. He is also scheduling out-patient cardiac rehab during this time so he can get stronger.
Being in the house without Tyler is weird. I've had a couple of moments where I expected Tyler to be here or to come back from a client appointment. Tyler is homesick but said he was glad I went to Denver to check on things. Most, if not all, of the other LVAD patients have been discharged so Tyler doesn't have his buddies to talk to when walking around the floor. Kinda lonely.
We still have a long way to go and that is not even including waiting for a heart transplant. Hopefully in the next two months he will become active again on the transplant list. Although...the nurses are now able to take his pulse without using the Doppler method. Hopefully a good sign that his left ventricle is pumping better. Fingers crossed!
Robert
Monday, December 14, 2009
Improving - Regular Days?
12/10/2009 - 12/12/2009
On Friday Tyler was able to do more laps walking around the 12th floor of the hospital. He is still using a walker and it causes his foot to swell but he is getting better and better. He also got into trouble for re-arranging the furniture in his room (a no-no for open heart surgery patients). He is also now off the IV and only taking his medication by pills. So now he only has the LVAD controller and EKG monitoring wires to deal with.
Tyler also told the staff to get rid of the contraption above his bed. Since he had leg surgery, one of the doctors ordered a pull-up device to hang over his bed so that he could use his arms to get himself out of the bed. Tyler said he wasn't going to pay for its use since he shouldn't be using his arms like that (due to open heart surgery), and that it was ridiculous that it was ordered.
We also got to put on our rings again. Lucy and I were able to take him out in a wheel chair to look at the Christmas lights around the hospital. It was a 30 minute excursion but nice to get him out of his room. Of course we also got to have excitement when we got back to his room. Tyler and I were switching from batteries to the main power unit. The system controller has two leads that supply power to his heart pump. I disconnected the first lead and at the same time Tyler disconnected the battery from the other lead. The "red heart alarm" went off, which means we stopped his pump. Within one second we had the power back to the pump and I collapsed into a chair....sweating. So, we got to experience the top level alarm in the hospital, didn't panic, and got power back to the pump. We also learned that only one person at a time should be fooling with the cables. I feel I'm comfortable changing the power source and will just let Tyler do this from now on.
Oh, and Tyler is not going to the 17th physical rehab floor now because we were told the nurses on that floor are not currently trained on LVAD patients. No, wait a minute, he should be able to go to the 17th floor according to one of the transplant surgeons. Ahhhh, the confusion continues. Hopefully he will make it to that floor soon or better yet out of the hospital.
Early afternoon Tyler and I got to take a nap together. Both of us were exhausted and Tyler had just done 6 continuous laps around the 12th floor, using his walker. The side effect though is being worn out and his foot swelling again. During the nap Tyler had a dream about having a heart attack. I still can't imagine what it must be like for Tyler.
Tyler and I went on another excursion outside the hospital and I'm hoping the next excursion will be to go further down the street. Maybe get a Starbucks coffee, eat at Chipolte, or have lunch somewhere together.
Got a call from DJ that there wasn't any water pressure in the house. He had already called Dave and Karen (from across the street). Sounded like a main broke or pipe burst. I could only imagine how much flooding was taking place.
Found out it was the water supply to the sprinklers. There is a valve in the crawl space that I turn off in the winter every year. There wasn't a pipe that burst, just a connector hose outside that supplies water to the sprinklers. DJ was able to go into the crawl space and turn off the valve and Dave helped to start getting the water that was pooling next to the house pumped out into the yard.
So, all crises have been averted for today. I had a moment where I thought about all the positive things that are happening around us, instead of just the horrible things. The most important is the friends and family that have jumped into action along with us or have been ready to jump in when called upon. Also all of the wonderful people in Houston (nurses, staff, bankers...) that have worked with me to protect as best as possible our interests. And the chance once again for Tyler and I to drive each other crazy. Okay, I'll be nice, the chance for Tyler and I to start moving towards getting back to Denver and starting our lives again....whatever that life may turn out to be.
12/13/2009
Tyler was put on some medication for the foot swelling and bed rest was ordered today. The swelling has gone down a lot. I've booked another flight to run back to Denver towards the end of this week. This will give me a chance to do a couple of work things I can't do in Houston and to pick up some more of Tyler's stuff for when he is released from the hospital (hopefully in another week!).
On Friday Tyler was able to do more laps walking around the 12th floor of the hospital. He is still using a walker and it causes his foot to swell but he is getting better and better. He also got into trouble for re-arranging the furniture in his room (a no-no for open heart surgery patients). He is also now off the IV and only taking his medication by pills. So now he only has the LVAD controller and EKG monitoring wires to deal with.
Tyler also told the staff to get rid of the contraption above his bed. Since he had leg surgery, one of the doctors ordered a pull-up device to hang over his bed so that he could use his arms to get himself out of the bed. Tyler said he wasn't going to pay for its use since he shouldn't be using his arms like that (due to open heart surgery), and that it was ridiculous that it was ordered.
We also got to put on our rings again. Lucy and I were able to take him out in a wheel chair to look at the Christmas lights around the hospital. It was a 30 minute excursion but nice to get him out of his room. Of course we also got to have excitement when we got back to his room. Tyler and I were switching from batteries to the main power unit. The system controller has two leads that supply power to his heart pump. I disconnected the first lead and at the same time Tyler disconnected the battery from the other lead. The "red heart alarm" went off, which means we stopped his pump. Within one second we had the power back to the pump and I collapsed into a chair....sweating. So, we got to experience the top level alarm in the hospital, didn't panic, and got power back to the pump. We also learned that only one person at a time should be fooling with the cables. I feel I'm comfortable changing the power source and will just let Tyler do this from now on.
Oh, and Tyler is not going to the 17th physical rehab floor now because we were told the nurses on that floor are not currently trained on LVAD patients. No, wait a minute, he should be able to go to the 17th floor according to one of the transplant surgeons. Ahhhh, the confusion continues. Hopefully he will make it to that floor soon or better yet out of the hospital.
Early afternoon Tyler and I got to take a nap together. Both of us were exhausted and Tyler had just done 6 continuous laps around the 12th floor, using his walker. The side effect though is being worn out and his foot swelling again. During the nap Tyler had a dream about having a heart attack. I still can't imagine what it must be like for Tyler.
Tyler and I went on another excursion outside the hospital and I'm hoping the next excursion will be to go further down the street. Maybe get a Starbucks coffee, eat at Chipolte, or have lunch somewhere together.
Got a call from DJ that there wasn't any water pressure in the house. He had already called Dave and Karen (from across the street). Sounded like a main broke or pipe burst. I could only imagine how much flooding was taking place.
Found out it was the water supply to the sprinklers. There is a valve in the crawl space that I turn off in the winter every year. There wasn't a pipe that burst, just a connector hose outside that supplies water to the sprinklers. DJ was able to go into the crawl space and turn off the valve and Dave helped to start getting the water that was pooling next to the house pumped out into the yard.
So, all crises have been averted for today. I had a moment where I thought about all the positive things that are happening around us, instead of just the horrible things. The most important is the friends and family that have jumped into action along with us or have been ready to jump in when called upon. Also all of the wonderful people in Houston (nurses, staff, bankers...) that have worked with me to protect as best as possible our interests. And the chance once again for Tyler and I to drive each other crazy. Okay, I'll be nice, the chance for Tyler and I to start moving towards getting back to Denver and starting our lives again....whatever that life may turn out to be.
12/13/2009
Tyler was put on some medication for the foot swelling and bed rest was ordered today. The swelling has gone down a lot. I've booked another flight to run back to Denver towards the end of this week. This will give me a chance to do a couple of work things I can't do in Houston and to pick up some more of Tyler's stuff for when he is released from the hospital (hopefully in another week!).
Thursday, December 10, 2009
Off the Roller Coaster?
12/09 - 12/10
It has felt over the past couple of days that the roller coaster ride is coming to an end. Now, maybe we'll just try the tilt-a-whirl. Instead of up and down, we'll just try spinning in different directions?
Tyler continues to improve. Appetite is up, gaining some weight, looking better and his hand writing is getting better. He continues to have problems with his right foot that is swollen, numb on the bottom, yet still feels pain in his toes and on the sides of his foot. He received a blood transfusion of about 2-3 pints since he has gradually lost some blood and his red blood cell count was low. The nurses went through 6 attempts to get an IV into him and it was painful to watch. He told them the sixth time was going to be the last if they couldn't get it in. His veins are hard to hit now and it took a nurse from IV Therapy to finally get the IV in.
Obviously he is getting a bit grumpy with all that is going on. Wonder why? He had a doctor tell him that he would never be able to drive a car without hand controls, since he wouldn't be able to use the pedals. This upset Tyler a lot. But this doctor isn't a neurologist or orthopedic doctor or a physical therapist. Tyler has come a lot further than any of the doctors originally thought, so this is just one more thing to prove the doctor wrong. His occupational therapist also told Tyler that the more therapy he does the better chance of recovering the use of his foot.
He took out some of his frustration on his occupational therapist and social worker that were in the room. They took it in stride, but I did notice they left me alone in the room and went into the hallway to look at Tyler's chart. I reminded Tyler that these were the people who were helping us out the most. He took a deep breath (metaphorically) and then apologized to them when they came back into the room. This not withstanding, he still is not shy about staying in charge of his medical treatment which is a good thing.
While the social worker was in the hall, she motioned for me to come out into the hallway. She was concerned with Tyler's face and speech. I told her that he keeps getting dry mouth and the moment he takes a sip of water he is fine. She wasn't buying this and went to get Tyler's nurse, Greg. Greg came in and did a quick test to see if Tyler had (or was having) a stroke. He made Tyler move his head around, some other stuff, and to follow Greg's finger with his eyes. Then Greg shook his finger rapidly from side to side. Tyler just looked at me and said "...Greg isreal funny once you get to know him." Made Greg and I laugh. Greg was able to find the medicine that has the dry mouth side effect and they were going to try and cut back on that.
Tyler has also met with the neurologist and a pain management team. He was told that it takes a nerve one month to repair one inch. He has 18 inches of damaged nerve to go. So in about 18 months we will know how much damage is permanent. It now appears that Tyler will move to another floor that is dedicated to physical therapy. This way he will get 3 hours of therapy time versus about 30 minutes now. Approvals have to take place but it looks good so far that he might be moved this coming Monday. I'm so excited as I haven't been on the 17th floor yet and just hate to think that we would finally go home and not have been on every possible floor and colored elevator that St. Luke's has to offer! Tyler was also able to walk around the 12th floor for 3 laps twice today. He started having more pain and numbness towards the end but this is a big leap. He also got into trouble for redecorating the room. He was moving around chairs and stuff because, like me, he can't stand the clutter. But he shouldn't be moving or lifting anything that is more than about 5 lbs.
Kristina, from the Rock Bottom past, sent me a contact at the University of Colorado Hospital. Yesterday I got in touch with Ann, the VAD/Circulatory Support person at the University of Colorado Hospital. Ann was really nice. She said we shouldn't have a problem transferring his care back to Denver. She called back asking for phone numbers for some of the doctors and staff and let me know that she had talked to the transplant surgeon already. The doctor even said..."is this the guy who worked at Rock Bottom Brewery? Of course we will take him." Whew! She is already putting the wheels in motion so that hopefully we can make it back to Denver. Maybe by end of January/beginning of February. At least that is the moving target we keep trying for.
Lucy is now in town and hanging out with Tyler. This gave me some time today to catch up with things. Called the mortgage company, did laundry, called the bank, cleaned the bathroom, had a business call, and did some work. Getting closer...
So, today was a good day. Yesterday was an okay day. But it seems the days are maybe (do I dare say this) leveling out a bit. There are still shocks that come in but I think our defense shields are holding up better. I'm glad we are on a tilt-a-whirl now. Now if we can just get back to the merry-go-round!
Robert
It has felt over the past couple of days that the roller coaster ride is coming to an end. Now, maybe we'll just try the tilt-a-whirl. Instead of up and down, we'll just try spinning in different directions?
Tyler continues to improve. Appetite is up, gaining some weight, looking better and his hand writing is getting better. He continues to have problems with his right foot that is swollen, numb on the bottom, yet still feels pain in his toes and on the sides of his foot. He received a blood transfusion of about 2-3 pints since he has gradually lost some blood and his red blood cell count was low. The nurses went through 6 attempts to get an IV into him and it was painful to watch. He told them the sixth time was going to be the last if they couldn't get it in. His veins are hard to hit now and it took a nurse from IV Therapy to finally get the IV in.
Obviously he is getting a bit grumpy with all that is going on. Wonder why? He had a doctor tell him that he would never be able to drive a car without hand controls, since he wouldn't be able to use the pedals. This upset Tyler a lot. But this doctor isn't a neurologist or orthopedic doctor or a physical therapist. Tyler has come a lot further than any of the doctors originally thought, so this is just one more thing to prove the doctor wrong. His occupational therapist also told Tyler that the more therapy he does the better chance of recovering the use of his foot.
He took out some of his frustration on his occupational therapist and social worker that were in the room. They took it in stride, but I did notice they left me alone in the room and went into the hallway to look at Tyler's chart. I reminded Tyler that these were the people who were helping us out the most. He took a deep breath (metaphorically) and then apologized to them when they came back into the room. This not withstanding, he still is not shy about staying in charge of his medical treatment which is a good thing.
While the social worker was in the hall, she motioned for me to come out into the hallway. She was concerned with Tyler's face and speech. I told her that he keeps getting dry mouth and the moment he takes a sip of water he is fine. She wasn't buying this and went to get Tyler's nurse, Greg. Greg came in and did a quick test to see if Tyler had (or was having) a stroke. He made Tyler move his head around, some other stuff, and to follow Greg's finger with his eyes. Then Greg shook his finger rapidly from side to side. Tyler just looked at me and said "...Greg is
Tyler has also met with the neurologist and a pain management team. He was told that it takes a nerve one month to repair one inch. He has 18 inches of damaged nerve to go. So in about 18 months we will know how much damage is permanent. It now appears that Tyler will move to another floor that is dedicated to physical therapy. This way he will get 3 hours of therapy time versus about 30 minutes now. Approvals have to take place but it looks good so far that he might be moved this coming Monday. I'm so excited as I haven't been on the 17th floor yet and just hate to think that we would finally go home and not have been on every possible floor and colored elevator that St. Luke's has to offer! Tyler was also able to walk around the 12th floor for 3 laps twice today. He started having more pain and numbness towards the end but this is a big leap. He also got into trouble for redecorating the room. He was moving around chairs and stuff because, like me, he can't stand the clutter. But he shouldn't be moving or lifting anything that is more than about 5 lbs.
Kristina, from the Rock Bottom past, sent me a contact at the University of Colorado Hospital. Yesterday I got in touch with Ann, the VAD/Circulatory Support person at the University of Colorado Hospital. Ann was really nice. She said we shouldn't have a problem transferring his care back to Denver. She called back asking for phone numbers for some of the doctors and staff and let me know that she had talked to the transplant surgeon already. The doctor even said..."is this the guy who worked at Rock Bottom Brewery? Of course we will take him." Whew! She is already putting the wheels in motion so that hopefully we can make it back to Denver. Maybe by end of January/beginning of February. At least that is the moving target we keep trying for.
Lucy is now in town and hanging out with Tyler. This gave me some time today to catch up with things. Called the mortgage company, did laundry, called the bank, cleaned the bathroom, had a business call, and did some work. Getting closer...
So, today was a good day. Yesterday was an okay day. But it seems the days are maybe (do I dare say this) leveling out a bit. There are still shocks that come in but I think our defense shields are holding up better. I'm glad we are on a tilt-a-whirl now. Now if we can just get back to the merry-go-round!
Robert
Tuesday, December 8, 2009
Movin' on Up!
Finally, I am able to write. Robert had to go back to Denver and I had no idea how to log on to this. (typical Tyler)..............
Last Friday I had surgery on my leg and they removed a blood clot. That seems to be healing well but now my foot is twice the size it should be. I have no feeling in the bottom of my foot and the pain in my toes is unbearable.
It has been a difficult week: full of pain; anxiety; sleepless nights; and not knowing when I will be able to come back to Denver. Today was a GREAT day. I walked with a walker a little and I road the bicycle for 20 minutes. Of course I feel the pain now but it is worth it.
Well time to go....as the tremors are getting worse.
I love you all.
Tyler
Last Friday I had surgery on my leg and they removed a blood clot. That seems to be healing well but now my foot is twice the size it should be. I have no feeling in the bottom of my foot and the pain in my toes is unbearable.
It has been a difficult week: full of pain; anxiety; sleepless nights; and not knowing when I will be able to come back to Denver. Today was a GREAT day. I walked with a walker a little and I road the bicycle for 20 minutes. Of course I feel the pain now but it is worth it.
Well time to go....as the tremors are getting worse.
I love you all.
Tyler
Monday, December 7, 2009
Back to Houston
Tyler had a rough day on Sunday. Foot and ankle was swollen and still in pain. Tried physical therapy but then his left knee buckled and he fell again. Was taken for CT Scan and X-ray. Also, his blood pressure dropped again. He was put back into the bed and hopefully today will be better.
The fund raiser was held last night and there were a lot of people in attendance. A good portion of the people I hadn't met before but had heard about from Tyler. When I entered I was in the back and the emcee was reading an email I had sent to Lucy and Nicole. I thought I was just going to give some insight for the emcee to use but he read the email verbatim. I was taken aback and had to leave for a moment. The email I sent is below. When I came back the emcee was still reading the email (I tend to be long-winded) and it was good to see people agreeing and laughing at the comments I had made. I thought I would be able to take the microphone, thank everyone, and give an update about Tyler. I just blubbered like an idiot. After that great performance I was able to mingle around a bit and meet a lot of great people. It was wonderful to see how many people came out on a cold snowy day in Denver in support of us. I also know that there were some from far away that couldn't make it and I completely understand.
The support has been wonderful from near and far. I really continue to grapple with trying to express my appreciation and heart-felt thanks to everyone who is helping out. Nicole and Lucy did a great job of organizing the fund raiser and it has bowled over Tyler and I. To everyone, thank you, thank you, thank you!
I'm flying back to Houston today and am just hoping this is a better day for Tyler.
Robert
The email that was read at the event:
Tyler is an extrovert and introvert.
He loves people and lots of them. He likes to have people surrounding him and can be a non-stop talker on the phone (likes to gossip). He made the comment just months after moving into our house, “We haven’t met our neighbors. When are we going to meet our neighbors.” Of course now he has met all the neighbors and likes to distribute the fruit from our trees to everyone, discuss yard care, trade vegetables, on and on.
He misses living at his old condo complex and the people there.
He is a charmer. Even in his unconscious state he made friends with the nursing staff. Even conscious and demanding the nurses and staff love him. He is able to be demanding yet make the person still want to help.
Tyler and I went to a brunch with friends Melissa and Scott. Tyler noticed the waiter had tended to two other tables before us, even though we had been seated first. When the waiter approached our table Tyler said “We’ve been waiting and you took the other tables orders before us. I worked in the restaurant industry, at Rock Bottom Brewery, and I just think it is unacceptable to have made us wait.” The waiter took our drink order and left. Tyler got up to go to the bathroom and Melissa and Scott looked at me. I said, “just wait”. By the middle of the brunch Tyler and the waiter were like old friends.
He LOVES the Rock Bottom Brewery and the friends he made there. He is a bit bossy and has been referred to as a “pit bull” by one of his contacts at BOAA Construction. He is demanding of people and usually gets the best out of people. He is also tough and caring in a big brother sort of way.
Extremely expressive. Has phrases such as, “That’s ridiculous!”, “I’m starving!”, “No!” (said with a particular inflection), “This is the BEST (insert object/meal/etc.) I’ve ever had!” (then the next thing the next day is “The BEST I’ve ever had”). He can be very opinionated. Many times I’ve been ready to leave for something and he looks at me and says....”what are you wearing?! No.” Clients have wanted particular things and have asked Tyler’s opinion and he was never shy in saying “No, you don’t really want that. That won’t work. Here is what you want.”
He always wants to contribute to causes and get people gifts. “We should donate money to this, we should donate money to that.” We have been to the Max Fund No-kill shelter benefit the past two years, he has donated money for politics, he has donated money to cancer causes, wants to donate money to the latest cause talked about on 60 minutes, and adopted animals. Couldn’t stand that the black lab next door was lonely after his owner passed away. Now we have Bowser (the lab) living with us. He wants to feed the stray cats in the neighborhood. He wanted to take care of a squirrel that for some reason came up to him when we were living at the condo.....to the point that I had to put up with this squirrel spending the night in a shoe box in the bed room. He truly has a tender heart (no pun intended).
He also is a “home body”. Loves his house and family. First concerns when becoming conscious were the animals and the house (especially Toby, our beagle). Loves working in the yard and loves going to the Ameristar casino in Central City. Can spend hours (and I mean 10 hours +) playing video poker and slots.
He likes things to be in an orderly way. A bit OCD. The hanging shirts have to be in a certain order based on a combination of sleeve length, shirt type, and color scheme.
He loves watching his TV shows (Biggest Looser, Amazing Race, Grey’s Anatomy, crime stories, Intervention,....). We always have a back log of shows and movies to watch because he likes so many of them. Would always make sure his shows were being recorded when we would go out to dinner or hang with friends. Hyper and ADD. He can’t sit still through movies, always hoping up and down because he has “things to do”.
He has redesigned our house many, many times. Every time I would come back from a business trip, the house would be different, even if in a microscopic way. Then he would feign disgust that I didn’t notice the change right away.
He gets lonely when I’m gone for a business trip and likes to surround himself with the animals and friends.
Great interior designer. Brings a homey, personal touch to each project. Always makes friends with his clients.
He is smart and worked extremely hard to build up his business. He comes up with different ideas constantly about how to enhance the business. I have no doubt Tyler will be able to rebuild a business once he recovers.
He is tough and a survivor. He has come through rehab and alcoholism and will come through this also. We have survived 2009 starting off with ELE (Tyler’s cat of almost 13 years and mine of about 6 years) being killed in the front yard by a coyote, my cancer surgery and chemo, the ups and downs of both of our small businesses, and now heart surgery and waiting on a heart transplant. He is taking charge of his care and dealing with the pump in his heart and the cord coming out of his body.
The fund raiser was held last night and there were a lot of people in attendance. A good portion of the people I hadn't met before but had heard about from Tyler. When I entered I was in the back and the emcee was reading an email I had sent to Lucy and Nicole. I thought I was just going to give some insight for the emcee to use but he read the email verbatim. I was taken aback and had to leave for a moment. The email I sent is below. When I came back the emcee was still reading the email (I tend to be long-winded) and it was good to see people agreeing and laughing at the comments I had made. I thought I would be able to take the microphone, thank everyone, and give an update about Tyler. I just blubbered like an idiot. After that great performance I was able to mingle around a bit and meet a lot of great people. It was wonderful to see how many people came out on a cold snowy day in Denver in support of us. I also know that there were some from far away that couldn't make it and I completely understand.
The support has been wonderful from near and far. I really continue to grapple with trying to express my appreciation and heart-felt thanks to everyone who is helping out. Nicole and Lucy did a great job of organizing the fund raiser and it has bowled over Tyler and I. To everyone, thank you, thank you, thank you!
I'm flying back to Houston today and am just hoping this is a better day for Tyler.
Robert
The email that was read at the event:
Tyler is an extrovert and introvert.
He loves people and lots of them. He likes to have people surrounding him and can be a non-stop talker on the phone (likes to gossip). He made the comment just months after moving into our house, “We haven’t met our neighbors. When are we going to meet our neighbors.” Of course now he has met all the neighbors and likes to distribute the fruit from our trees to everyone, discuss yard care, trade vegetables, on and on.
He misses living at his old condo complex and the people there.
He is a charmer. Even in his unconscious state he made friends with the nursing staff. Even conscious and demanding the nurses and staff love him. He is able to be demanding yet make the person still want to help.
Tyler and I went to a brunch with friends Melissa and Scott. Tyler noticed the waiter had tended to two other tables before us, even though we had been seated first. When the waiter approached our table Tyler said “We’ve been waiting and you took the other tables orders before us. I worked in the restaurant industry, at Rock Bottom Brewery, and I just think it is unacceptable to have made us wait.” The waiter took our drink order and left. Tyler got up to go to the bathroom and Melissa and Scott looked at me. I said, “just wait”. By the middle of the brunch Tyler and the waiter were like old friends.
He LOVES the Rock Bottom Brewery and the friends he made there. He is a bit bossy and has been referred to as a “pit bull” by one of his contacts at BOAA Construction. He is demanding of people and usually gets the best out of people. He is also tough and caring in a big brother sort of way.
Extremely expressive. Has phrases such as, “That’s ridiculous!”, “I’m starving!”, “No!” (said with a particular inflection), “This is the BEST (insert object/meal/etc.) I’ve ever had!” (then the next thing the next day is “The BEST I’ve ever had”). He can be very opinionated. Many times I’ve been ready to leave for something and he looks at me and says....”what are you wearing?! No.” Clients have wanted particular things and have asked Tyler’s opinion and he was never shy in saying “No, you don’t really want that. That won’t work. Here is what you want.”
He always wants to contribute to causes and get people gifts. “We should donate money to this, we should donate money to that.” We have been to the Max Fund No-kill shelter benefit the past two years, he has donated money for politics, he has donated money to cancer causes, wants to donate money to the latest cause talked about on 60 minutes, and adopted animals. Couldn’t stand that the black lab next door was lonely after his owner passed away. Now we have Bowser (the lab) living with us. He wants to feed the stray cats in the neighborhood. He wanted to take care of a squirrel that for some reason came up to him when we were living at the condo.....to the point that I had to put up with this squirrel spending the night in a shoe box in the bed room. He truly has a tender heart (no pun intended).
He also is a “home body”. Loves his house and family. First concerns when becoming conscious were the animals and the house (especially Toby, our beagle). Loves working in the yard and loves going to the Ameristar casino in Central City. Can spend hours (and I mean 10 hours +) playing video poker and slots.
He likes things to be in an orderly way. A bit OCD. The hanging shirts have to be in a certain order based on a combination of sleeve length, shirt type, and color scheme.
He loves watching his TV shows (Biggest Looser, Amazing Race, Grey’s Anatomy, crime stories, Intervention,....). We always have a back log of shows and movies to watch because he likes so many of them. Would always make sure his shows were being recorded when we would go out to dinner or hang with friends. Hyper and ADD. He can’t sit still through movies, always hoping up and down because he has “things to do”.
He has redesigned our house many, many times. Every time I would come back from a business trip, the house would be different, even if in a microscopic way. Then he would feign disgust that I didn’t notice the change right away.
He gets lonely when I’m gone for a business trip and likes to surround himself with the animals and friends.
Great interior designer. Brings a homey, personal touch to each project. Always makes friends with his clients.
He is smart and worked extremely hard to build up his business. He comes up with different ideas constantly about how to enhance the business. I have no doubt Tyler will be able to rebuild a business once he recovers.
He is tough and a survivor. He has come through rehab and alcoholism and will come through this also. We have survived 2009 starting off with ELE (Tyler’s cat of almost 13 years and mine of about 6 years) being killed in the front yard by a coyote, my cancer surgery and chemo, the ups and downs of both of our small businesses, and now heart surgery and waiting on a heart transplant. He is taking charge of his care and dealing with the pump in his heart and the cord coming out of his body.
Sunday, December 6, 2009
In Denver
I decided to come back for the weekend. It was hard leaving Tyler again, especially since no one is in Houston. Okay, the professionals are there.
And of course it is snowing in Denver. Hopefully it won't be to much. I plan on attending the benefit tonight at Rock Bottom and kinda kept my coming back a secret. Didn't know if I would make it back and just wanted to sit quietly in DJ's house...I mean mine and Tyler's house. Feels very weird. Waking up this morning I was hoping that the last 6 weeks had been a dream. Guess not.
Tyler was still in pain yesterday but was moved back to the 12th floor. He harassed the 2nd floor nurse, Zereena, to let me come back for visitation since I was leaving. The nurse called me and almost begged me to come back!
He is eating a lot better. He was moving his right foot better also. He is still having some trembling from the drugs and it makes it hard for him to type on the laptop. I talked to him this morning and he seems to have lost some feeling again in his foot.
Tyler is starting to grapple with what the future holds, what bills are due, what he owes to everyone and how to get it done.
Dr. Karr showed Tyler and I a cardiogram of a beating heart. He then showed us Tyler's heart when he came in that first night. It was just sitting there doing nothing. The doctor said it was divine intervention that Tyler was here with us.
Janet, whose husband has an LVAD also, graciously visited Tyler last night and took him some home-made spaghetti. Very nice and Tyler said it was great.
So, I'm hoping to see a lot of people tonight and be able to express our thanks for all the support. Tyler and I both still feeling very odd at being in this position but know we can't do this alone.
Robert
And of course it is snowing in Denver. Hopefully it won't be to much. I plan on attending the benefit tonight at Rock Bottom and kinda kept my coming back a secret. Didn't know if I would make it back and just wanted to sit quietly in DJ's house...I mean mine and Tyler's house. Feels very weird. Waking up this morning I was hoping that the last 6 weeks had been a dream. Guess not.
Tyler was still in pain yesterday but was moved back to the 12th floor. He harassed the 2nd floor nurse, Zereena, to let me come back for visitation since I was leaving. The nurse called me and almost begged me to come back!
He is eating a lot better. He was moving his right foot better also. He is still having some trembling from the drugs and it makes it hard for him to type on the laptop. I talked to him this morning and he seems to have lost some feeling again in his foot.
Tyler is starting to grapple with what the future holds, what bills are due, what he owes to everyone and how to get it done.
Dr. Karr showed Tyler and I a cardiogram of a beating heart. He then showed us Tyler's heart when he came in that first night. It was just sitting there doing nothing. The doctor said it was divine intervention that Tyler was here with us.
Janet, whose husband has an LVAD also, graciously visited Tyler last night and took him some home-made spaghetti. Very nice and Tyler said it was great.
So, I'm hoping to see a lot of people tonight and be able to express our thanks for all the support. Tyler and I both still feeling very odd at being in this position but know we can't do this alone.
Robert
Friday, December 4, 2009
Leg Surgery
Tyler had surgery today on his leg today. Got through surgery fine. The nerve they were looking at also looks fine. They said it appears he has had some arterial damage from some blood clot (side effect of the LVAD). Again, they are still not sure exactly what happened. The orthopedic nurse told me that he may need a brace (small plastic shoe insert) for walking. And that it may take from many months to a year to see if the nerve returns. The orthopedic nurse explained that he will be able to adapt to this and that physical therapy should resume next week. The neurologist (Dr. Irr) will have to now step back in and see why the nerve is causing so much pain. They found some dead muscle tissue in the calf but not extensive. Basically Tyler may have problems flexing his foot. They are also concerned with some blood flow to the big and little toe on his right foot but so far his color has remained good. I'm not to worried about the toes. The medicine Tyler had been put on a couple of days ago was making him tremble. This may have messed up the test results.
The nurses on the 12th floor asked how I was doing today and looked very concerned. I didn't understand why until they told me that Tyler was very concerned about me. Wow. I remember how concerned I was about him during my chemo treatments. Turn-about is fair play?
Tyler is back on the 2nd floor in CV-ICU. And to top it all off, in the same bed as when he first arrived in Houston. What kind of irony is that!
The cardiac surgeon came in and asked Tyler to push his foot forward and backward. Caused Tyler a lot of pain but he was able to move the foot. Not as much as his left foot but still movement. He is in a lot of pain and described the pain as a shooting hot pain on his leg. I'm hoping things get better with his leg and foot. I think Tyler has the motivation and spirit to make it get better.
He will be in CV-ICU overnight for observation and then be able to go back to his room on the 12th floor tomorrow.
His nurse tonight has a dog that she treats just like Tyler treats Toby. I think they will get along just fine. We showed each other pictures on our phones of our dogs. Larry Brown, the cath lab nurse that presented Tyler's case at the symposium last month came up to see how Tyler was doing and.....to ask Tyler if he would be willing to go to a conference they are having in August in Houston. I mean really!! Tyler the "Rock Star" lives on. They would fly him to Houston so that the conference attendees can hear about his case and see him walking around. Very impressive.
Tyler called me from his bed tonight. It finally dawned on me that he was calling from his cell phone. I asked how he got his phone. A nurse from the second floor went up to the room and got the phone for him. Thing is, I had put his phone in a small cubbyhole that has a door on it. The nurse must have had a great time trying to find that! Did I mention I'm in love with the nurses and support staff. He is getting anxious about the future and our new reality. We both still desperately want to hold onto the house and be back in Denver with our friends. Only time will tell how long that is actually going to take, but it is good to have a goal!
Robert
The nurses on the 12th floor asked how I was doing today and looked very concerned. I didn't understand why until they told me that Tyler was very concerned about me. Wow. I remember how concerned I was about him during my chemo treatments. Turn-about is fair play?
Tyler is back on the 2nd floor in CV-ICU. And to top it all off, in the same bed as when he first arrived in Houston. What kind of irony is that!
The cardiac surgeon came in and asked Tyler to push his foot forward and backward. Caused Tyler a lot of pain but he was able to move the foot. Not as much as his left foot but still movement. He is in a lot of pain and described the pain as a shooting hot pain on his leg. I'm hoping things get better with his leg and foot. I think Tyler has the motivation and spirit to make it get better.
He will be in CV-ICU overnight for observation and then be able to go back to his room on the 12th floor tomorrow.
His nurse tonight has a dog that she treats just like Tyler treats Toby. I think they will get along just fine. We showed each other pictures on our phones of our dogs. Larry Brown, the cath lab nurse that presented Tyler's case at the symposium last month came up to see how Tyler was doing and.....to ask Tyler if he would be willing to go to a conference they are having in August in Houston. I mean really!! Tyler the "Rock Star" lives on. They would fly him to Houston so that the conference attendees can hear about his case and see him walking around. Very impressive.
Tyler called me from his bed tonight. It finally dawned on me that he was calling from his cell phone. I asked how he got his phone. A nurse from the second floor went up to the room and got the phone for him. Thing is, I had put his phone in a small cubbyhole that has a door on it. The nurse must have had a great time trying to find that! Did I mention I'm in love with the nurses and support staff. He is getting anxious about the future and our new reality. We both still desperately want to hold onto the house and be back in Denver with our friends. Only time will tell how long that is actually going to take, but it is good to have a goal!
Robert
Thursday, December 3, 2009
A better day?
Thanks to everyone for letting me rant in my last post. I got my fears and stress out and feel better today. Hope I didn't scare to many people (including Tyler....I know you are reading this! Great, I'm going to have to only tell good Tyler stories now!)
Tyler did not have surgery today....again! They decided to try and aspirate the area in his leg, but were only able to get a little blood out. They think the problem is still a cyst or something in the muscle. So guess what.....surgery scheduled for tomorrow (third time is the charm!) The doctors are still worried about the anesthesia that Tyler will be under and the blood thinners he has been on. They had reduced the blood thinners a couple of days ago so I'm very hopeful he will be fine. We are both really praying that this gets resolved tomorrow. He is still in a lot of pain but hanging in there. Seems like his spirit is holding together and getting all the cards, email, and e-greetings is helping a lot.
Tyler is doing better than me on keeping up with all his "numbers". His INR is this, his blah blah is that. He knows what meds he is taking, what they do, and when they are scheduled. He goes over the details with each nurse, each shift and really seems to be taking control of things. The nurses and therapist seem to be hanging in there with him and are great at going over things. I know I should be keeping up with this also, but I'm just enjoying talking with Tyler and watching him....hoping he gets better and better. His appetite is also better and I'm getting to hear "I'm...starving!" again (yea).
We were able to get some more things taken care of and the list is getting shorter. We are both still amazed at how the fundraiser on Sunday is taking shape. We have gone to Max Fund's benefit (no-kill shelter) twice and know that side of a benefit/fundraiser. So it is an odd feeling to be on the other side of a benefit. It is an odd, humbling experience but in a good, positive way.
Tyler was very nice to me and gave me the "night off". I went back to the apartment (I refuse to call it "home") and was able to start tying up some loose ends and get my notes together.
So, it was not great that the aspiration wasn't all we had hoped for but at least there is actual action being taken on the problem. I got to sit next to his bed as he slept this afternoon (I think due to new meds) and got to watch a fascinating show on counterfeiting money. Hmmmmm, interesting idea. We got to spend more time together without a ton of interruptions. So it was a better day. I think.
Robert
Tyler did not have surgery today....again! They decided to try and aspirate the area in his leg, but were only able to get a little blood out. They think the problem is still a cyst or something in the muscle. So guess what.....surgery scheduled for tomorrow (third time is the charm!) The doctors are still worried about the anesthesia that Tyler will be under and the blood thinners he has been on. They had reduced the blood thinners a couple of days ago so I'm very hopeful he will be fine. We are both really praying that this gets resolved tomorrow. He is still in a lot of pain but hanging in there. Seems like his spirit is holding together and getting all the cards, email, and e-greetings is helping a lot.
Tyler is doing better than me on keeping up with all his "numbers". His INR is this, his blah blah is that. He knows what meds he is taking, what they do, and when they are scheduled. He goes over the details with each nurse, each shift and really seems to be taking control of things. The nurses and therapist seem to be hanging in there with him and are great at going over things. I know I should be keeping up with this also, but I'm just enjoying talking with Tyler and watching him....hoping he gets better and better. His appetite is also better and I'm getting to hear "I'm...starving!" again (yea).
We were able to get some more things taken care of and the list is getting shorter. We are both still amazed at how the fundraiser on Sunday is taking shape. We have gone to Max Fund's benefit (no-kill shelter) twice and know that side of a benefit/fundraiser. So it is an odd feeling to be on the other side of a benefit. It is an odd, humbling experience but in a good, positive way.
Tyler was very nice to me and gave me the "night off". I went back to the apartment (I refuse to call it "home") and was able to start tying up some loose ends and get my notes together.
So, it was not great that the aspiration wasn't all we had hoped for but at least there is actual action being taken on the problem. I got to sit next to his bed as he slept this afternoon (I think due to new meds) and got to watch a fascinating show on counterfeiting money. Hmmmmm, interesting idea. We got to spend more time together without a ton of interruptions. So it was a better day. I think.
Robert
Tuesday, December 1, 2009
Loosing Faith
Note: Please understand the following is an expression of my anger phase.
This is never ending. There is to much to do. I have no faith anymore that this is doable. I want to strangle all the staff at St. Luke's. (A side note: the nurses and PCAs continue to be wonderful. Caring, attentive, helpful with local information.)
I want to go f'ing home! I want Tyler out of this hospital. I want to know what we did that was so bad to be put in this situation. I want the phrase "..works in mysterious ways" to actually mean something. I want to know what I'm supposed to be doing and striving for.
Tyler was going to have surgery today (12/2/2009) on his leg. Well, I guess not. His blood clotting factor is not high/low enough. Maybe tomorrow. Thank goodness that the doctors have been so "proactive" as to wait two weeks to deal with this. Thank goodness that it didn't take both Tyler and I complaining (it did!) to get the doctors to pay attention.
So St. Luke's can replace organs including a heart, but can't figure out how to deal with a blood clot/cyst in a leg. Hmmmm, maybe we should be in Denver for the leg and Houston for the heart. What is one more thing to deal with?
To do:
Make sure to watch the LVAD DVD with Tyler.
Make sure to learn how to change his wound dressing every day.
Go to the LVAD class.
Figure out what we'll need if we can ever get back home. Can we transfer care and be on a transplant list to Denver? Is that the right thing to do?
Deal with finances to make sure Tyler and I's bills hold steady until, what, medical bankruptcy?
Remember to thank the wonderful people who have already donated to Tyler and I, and who understand/accept our relationship. Remember to look past those people who don't understand.
Remember to thank those people in our community that have done everything they can to guide us through the "system". Even the Wells Fargo banker is going out of his way to help us try and hold it together.
Remember to try and figure out how to deal with my cancer treatment (Ha!).
Remember to take this day by day (the hardest part)!
Deal with comments from St. Luke's:
"We are working on getting you guys back to Denver and back to your old life....."
"Well, you should be going home next week, next month, yesterday, next year..."
"Well, the doctors get possessive and may not want you to transfer your care to Denver."
Can anyone one say indentured servant? Guinea pig?
Deal with trying to work so I can still bring in income.
From the internet provider in Houston: "Static IP? What is that? No one asks for a static IP here in Houston." In what suburb of hell have we landed?
Both Tyler and I have become very frustrated and angry with the situation and the responses we are getting. No straight answers....ever. And then we have the audacity to say to St. Luke's that we want to go home. And further more, where have the doctors that are so "possessive" gone? It seems the only doctor that has any interest is the neurologist. The others send surrogates who don't know what is going on and step into the room for a second and then leave, without saying a word. I don't think Tyler and I are asking to much to be informed about what is going on. Why do we have to constantly complain to get any attention? Why does Tyler have to say to the lead doctor, "....well, I'm not leaving this hospital with a fake heart AND a bum leg!", before the doctor pays attention?
Tyler is lonely and anxious. Nicole coming out helped a lot. I want to be there to help him through this, but my days are spent putting out fires, avoiding new ones, figuring out how to get back to Denver, figuring out how to live in Houston if we get stuck here. Juggling and fighting with insurance companies, mortgage companies, banks. Slashing expenses as fast and as deep as I can.
When? Where? How? All the questions that have still to be answered.
When can we get out of the hospital? When will they deal with Tyler's leg? How soon can Tyler start physical therapy again? How do we get back to Denver and our home? What is life going to be like?
Get Social Security Disability filed. Get Wells Fargo checking handled. Get SUV loan handled, mortgage handled, phone, utilities, house, condo, Houston, medical, mental....on and on and on. I would do this over and over again for Tyler and I. It sucks, but this is where we are at. And "so it is".
Okay, rant over.
Tyler made Denver news. In the December 1st, 2009 paper, a regular columnist (Penny Parker) mentioned Tyler and the fund raiser at Rock Bottom Brewery. There are several people working very hard to make this a success. My thanks to them and to Rock Bottom for doing this. It is the love and support of friends and family that will get us through this.
I spent the night in the hospital room with Tyler, on the torture twin bed couch thingy. It was nice to at least be close to Tyler overnight. I'm trying to figure out how to schedule my day so that I can be with him at night. I'm also trying to keep his room straightened up. Most of the staff just throws stuff into his room and it is a pile of clutter when I get there (oops, another rant slipped in). He is still in a lot of pain and stuck in that bed. This is not Tyler. He keeps pushing himself to do as much for himself as possible. He gets dehydrated but he isn't supposed to drink so much water as his sodium levels are low.
We will overcome this, if for no other reason than to spite the universe that has put us in this situation! I know that support is out there. I know that Tyler is a fighter. I know that something will come of this that is meant to be. I'm just hitting a large speed bump in this event. Tyler and I will be okay.....someday.
(Final Note: Please, please, do not freak out about this posting. Just needed to unload so that I can take the next baby step.)
Robert
This is never ending. There is to much to do. I have no faith anymore that this is doable. I want to strangle all the staff at St. Luke's. (A side note: the nurses and PCAs continue to be wonderful. Caring, attentive, helpful with local information.)
I want to go f'ing home! I want Tyler out of this hospital. I want to know what we did that was so bad to be put in this situation. I want the phrase "..works in mysterious ways" to actually mean something. I want to know what I'm supposed to be doing and striving for.
Tyler was going to have surgery today (12/2/2009) on his leg. Well, I guess not. His blood clotting factor is not high/low enough. Maybe tomorrow. Thank goodness that the doctors have been so "proactive" as to wait two weeks to deal with this. Thank goodness that it didn't take both Tyler and I complaining (it did!) to get the doctors to pay attention.
So St. Luke's can replace organs including a heart, but can't figure out how to deal with a blood clot/cyst in a leg. Hmmmm, maybe we should be in Denver for the leg and Houston for the heart. What is one more thing to deal with?
To do:
Make sure to watch the LVAD DVD with Tyler.
Make sure to learn how to change his wound dressing every day.
Go to the LVAD class.
Figure out what we'll need if we can ever get back home. Can we transfer care and be on a transplant list to Denver? Is that the right thing to do?
Deal with finances to make sure Tyler and I's bills hold steady until, what, medical bankruptcy?
Remember to thank the wonderful people who have already donated to Tyler and I, and who understand/accept our relationship. Remember to look past those people who don't understand.
Remember to thank those people in our community that have done everything they can to guide us through the "system". Even the Wells Fargo banker is going out of his way to help us try and hold it together.
Remember to try and figure out how to deal with my cancer treatment (Ha!).
Remember to take this day by day (the hardest part)!
Deal with comments from St. Luke's:
"We are working on getting you guys back to Denver and back to your old life....."
"Well, you should be going home next week, next month, yesterday, next year..."
"Well, the doctors get possessive and may not want you to transfer your care to Denver."
Can anyone one say indentured servant? Guinea pig?
Deal with trying to work so I can still bring in income.
From the internet provider in Houston: "Static IP? What is that? No one asks for a static IP here in Houston." In what suburb of hell have we landed?
Both Tyler and I have become very frustrated and angry with the situation and the responses we are getting. No straight answers....ever. And then we have the audacity to say to St. Luke's that we want to go home. And further more, where have the doctors that are so "possessive" gone? It seems the only doctor that has any interest is the neurologist. The others send surrogates who don't know what is going on and step into the room for a second and then leave, without saying a word. I don't think Tyler and I are asking to much to be informed about what is going on. Why do we have to constantly complain to get any attention? Why does Tyler have to say to the lead doctor, "....well, I'm not leaving this hospital with a fake heart AND a bum leg!", before the doctor pays attention?
Tyler is lonely and anxious. Nicole coming out helped a lot. I want to be there to help him through this, but my days are spent putting out fires, avoiding new ones, figuring out how to get back to Denver, figuring out how to live in Houston if we get stuck here. Juggling and fighting with insurance companies, mortgage companies, banks. Slashing expenses as fast and as deep as I can.
When? Where? How? All the questions that have still to be answered.
When can we get out of the hospital? When will they deal with Tyler's leg? How soon can Tyler start physical therapy again? How do we get back to Denver and our home? What is life going to be like?
Get Social Security Disability filed. Get Wells Fargo checking handled. Get SUV loan handled, mortgage handled, phone, utilities, house, condo, Houston, medical, mental....on and on and on. I would do this over and over again for Tyler and I. It sucks, but this is where we are at. And "so it is".
Okay, rant over.
Tyler made Denver news. In the December 1st, 2009 paper, a regular columnist (Penny Parker) mentioned Tyler and the fund raiser at Rock Bottom Brewery. There are several people working very hard to make this a success. My thanks to them and to Rock Bottom for doing this. It is the love and support of friends and family that will get us through this.
I spent the night in the hospital room with Tyler, on the torture twin bed couch thingy. It was nice to at least be close to Tyler overnight. I'm trying to figure out how to schedule my day so that I can be with him at night. I'm also trying to keep his room straightened up. Most of the staff just throws stuff into his room and it is a pile of clutter when I get there (oops, another rant slipped in). He is still in a lot of pain and stuck in that bed. This is not Tyler. He keeps pushing himself to do as much for himself as possible. He gets dehydrated but he isn't supposed to drink so much water as his sodium levels are low.
We will overcome this, if for no other reason than to spite the universe that has put us in this situation! I know that support is out there. I know that Tyler is a fighter. I know that something will come of this that is meant to be. I'm just hitting a large speed bump in this event. Tyler and I will be okay.....someday.
(Final Note: Please, please, do not freak out about this posting. Just needed to unload so that I can take the next baby step.)
Robert
Monday, November 30, 2009
ALMOST 6 WEEKS
Yes, this is really me. I'm finally able to concentrate enough to write this blog, and I want to thank everyone for their thoughts and prayers. It is very difficult when you go on a trip to Mexico and the next thing you know, 6 weeks later, you're in Houston recovering from a heart attack.
I have been awake for a little over 2 weeks now, and today was the most difficult day I've had thus far. It was emotional because I'm so far away from home. I miss my animals, friends, and family. Robert and I are researching the possibility of a transplant in Denver because I'm so homesick.
Thank God for Robert. If it wasn't for him, I don't know how I could see myself through any of this. Not only does he show support for me personally, but as you all know, his support is helpful to all of my friends and family.
Keep us in your thoughts and prayers.
Love,
Tyler
I have been awake for a little over 2 weeks now, and today was the most difficult day I've had thus far. It was emotional because I'm so far away from home. I miss my animals, friends, and family. Robert and I are researching the possibility of a transplant in Denver because I'm so homesick.
Thank God for Robert. If it wasn't for him, I don't know how I could see myself through any of this. Not only does he show support for me personally, but as you all know, his support is helpful to all of my friends and family.
Keep us in your thoughts and prayers.
Love,
Tyler
Sunday, November 29, 2009
What next?
Tyler is still pretty stable for his condition. He is still trying to get surgery scheduled for the cyst in his leg. He was wheeled outside to get some "fresh" air, but his blood pressure dropped and had to go back to the hospital room. He is still weak and trying to eat more. Once he gets his leg problem dealt with, he will start doing more physical therapy.
We have begun talking more about finances and the future. We can only get so far before it becomes overwhelming. There are just so many variables that are unknown still, including ....when can he leave the hospital, when can we get back to Denver, can we stay in Denver or is it just a visit? What bills can/should be paid?
Now that Tyler is conscious, we have signed a bunch of power of attorney's. We have been cutting expenses as fast as we can. We are trying to grapple with what our new reality will look like and it gets frustrating as we don't know from day to day what will happen. After a point, we back down and decide we will see what "tomorrow" will bring. I still just want to be able to help him physically and emotionally.
Tyler has learned more about his LVAD. How it sits in his body, what the components are, and has started switching from direct power to batteries. I was able to change his dressing at the cord exit site while being instructed about how to keep things sterile. I was happy that he dozed off while I was doing it. Made me feel less nervous and that I wasn't hurting him. All these new things will become routine one day. At some point Tyler might be able to change the dressing himself while sitting in front of a mirror.
Tyler is getting closer to posting something on the blog...stay tuned.
Robert
We have begun talking more about finances and the future. We can only get so far before it becomes overwhelming. There are just so many variables that are unknown still, including ....when can he leave the hospital, when can we get back to Denver, can we stay in Denver or is it just a visit? What bills can/should be paid?
Now that Tyler is conscious, we have signed a bunch of power of attorney's. We have been cutting expenses as fast as we can. We are trying to grapple with what our new reality will look like and it gets frustrating as we don't know from day to day what will happen. After a point, we back down and decide we will see what "tomorrow" will bring. I still just want to be able to help him physically and emotionally.
Tyler has learned more about his LVAD. How it sits in his body, what the components are, and has started switching from direct power to batteries. I was able to change his dressing at the cord exit site while being instructed about how to keep things sterile. I was happy that he dozed off while I was doing it. Made me feel less nervous and that I wasn't hurting him. All these new things will become routine one day. At some point Tyler might be able to change the dressing himself while sitting in front of a mirror.
Tyler is getting closer to posting something on the blog...stay tuned.
Robert
Tuesday, November 24, 2009
Adjusting
My apologies for missing a blog entry yesterday. I hope it didn't worry anyone unnecessarily. I got wrapped up in financial stuff and just wanted to spend time with Tyler.
Happy Thanksgiving.
It is obvious what I'm thankful for this year....that this year is is almost over! ;-) The year started off with ELE (his cat of I think 11 - 13 years) being killed. Then I had my cancer surgery and chemo. Then Tyler's heart attack. I know it goes without saying, but I am so thankful I can talk to Tyler again even if it is about the long road ahead. I'm thankful that Tyler and I continue to survive life's biggest challenges that can be thrown at us. Talk about a reality show!
Tyler continues to make progress and I continue to tell the story of what happened. Or try to. Tyler is visited by so many nurses and doctors it truly is like a revolving door and it is frustrating to both Tyler and me. We get to a heavy part of the story and another person walks in. Also, each different doctor (who has a different specialty) is telling us different things and we keep trying to adjust to new information. Tyler is very determined to get up and out of bed, but something is going on with his right lower leg. It is a large cyst in his calf muscle that is putting pressure on his nerves and his is going to have surgery once the cardiologist determines when he can have it.
Tyler's mini-laptop came in and I'll be taking that to him today. He'll be able to be more connected and the next post you see on this blog could be from him. He is still working at getting his strength back and eating more. He was able to sign his name on some documents so that I can continue to hold things together. His meds keep being adjusted and he also is having problems sleeping. Our next goal is to be able to get him in a wheel chair so we can at least go outside for a little bit for some fresh Houston air (sarcasm intended).
The biggest thing he is struggling with is what has happened and dealing with this new reality. He commented how unreal this was and how he has a new appreciation for what Kelley went through. He is very homesick and getting tired of being in the hospital bed and he is also becoming overwhelmed by all the information coming in and decisions that have to be made. More importantly, he is becoming overwhelmed by the support and love from his friends and family. He has read through the e-greetings that have been sent so far and will be reading the blog and blog comments soon. I hope he understands that there is a reason he is still alive and continues to improve, that there can be a decent life with the LVAD, and that someone with this many friends needs to be around to see just how much he is loved. We continue to talk to the transplant social worker as Tyler tries to digest all that a transplant will entail. We keep getting mixed dates about when he may be able to get out of the hospital and when we could take a trip to visit Denver and when we would have to come back to Houston. All depends on how quickly Tyler recovers. We both have to go to a LVAD class that is mandatory, go on 3 or 4 short "outings" from the hospital, and he has to be able to walk around the 12th floor six full laps before he can be discharged. Once he is discharged I'll have to stay with Tyler until someone else learns about the LVAD. One funny side note is that I was being shown how to switch the controller's cords from the Power Base Unit (beside unit) to batteries as Tyler was being transported to have an ultra-sound and CT Scan. The nurse made a point of how important it was to always have the backup controller and batteries. After they took Tyler away, I was leaving his room and noticed the transport nurses had left the backup controller and batteries. I saw his nurse in the hallway and told her about it. She couldn't believe the transport nurses forgot to take it and I said, ".....okay, that is one demerit. Better not be another."
We are both now struggling with what the future will bring, both start thinking about the long term future, and then try to remember that the only future we can really deal with is the next day. As we struggle to try and get back some normalcy, we are also trying to still make sense of what has happened and where we are headed next. The biggest struggle is making sure I can still work, that we can keep the house, and where we will be living in 2010....Houston or Denver. These decisions will work themselves out but both Tyler and I are very anxious. I'm starting to get angry at different things that aren't really the true sources of my anger. Just going through the anger stage every now and then. Tyler will hit these stages also, but has already commented.. "how could I be mad at anyone for making this decision for me." He understands the situation we were put in and while he struggles with this major adjustment, he knows the decisions made were out of love. I've also told him about the struggles we went through in making this decision for him. We wanted Tyler to be able to have a good life again and made the best choice based on the info we received.
It sounds like the fund-raising event on December 6th is coming along. Many, many thanks to everyone that is donating items for the raffle and that are planning on attending. I've told Tyler about this and it makes him and I cry to know how much support we are receiving. I truly hope that this is good karma coming back to us.
I hope everyone has a good Thanksgiving and that this blog has not been to overwhelming for people to read. I'm truly looking forward to Tyler writing on this blog and things finally calming down enough to spend actual quality time with Tyler.
Robert
Happy Thanksgiving.
It is obvious what I'm thankful for this year....that this year is is almost over! ;-) The year started off with ELE (his cat of I think 11 - 13 years) being killed. Then I had my cancer surgery and chemo. Then Tyler's heart attack. I know it goes without saying, but I am so thankful I can talk to Tyler again even if it is about the long road ahead. I'm thankful that Tyler and I continue to survive life's biggest challenges that can be thrown at us. Talk about a reality show!
Tyler continues to make progress and I continue to tell the story of what happened. Or try to. Tyler is visited by so many nurses and doctors it truly is like a revolving door and it is frustrating to both Tyler and me. We get to a heavy part of the story and another person walks in. Also, each different doctor (who has a different specialty) is telling us different things and we keep trying to adjust to new information. Tyler is very determined to get up and out of bed, but something is going on with his right lower leg. It is a large cyst in his calf muscle that is putting pressure on his nerves and his is going to have surgery once the cardiologist determines when he can have it.
Tyler's mini-laptop came in and I'll be taking that to him today. He'll be able to be more connected and the next post you see on this blog could be from him. He is still working at getting his strength back and eating more. He was able to sign his name on some documents so that I can continue to hold things together. His meds keep being adjusted and he also is having problems sleeping. Our next goal is to be able to get him in a wheel chair so we can at least go outside for a little bit for some fresh Houston air (sarcasm intended).
The biggest thing he is struggling with is what has happened and dealing with this new reality. He commented how unreal this was and how he has a new appreciation for what Kelley went through. He is very homesick and getting tired of being in the hospital bed and he is also becoming overwhelmed by all the information coming in and decisions that have to be made. More importantly, he is becoming overwhelmed by the support and love from his friends and family. He has read through the e-greetings that have been sent so far and will be reading the blog and blog comments soon. I hope he understands that there is a reason he is still alive and continues to improve, that there can be a decent life with the LVAD, and that someone with this many friends needs to be around to see just how much he is loved. We continue to talk to the transplant social worker as Tyler tries to digest all that a transplant will entail. We keep getting mixed dates about when he may be able to get out of the hospital and when we could take a trip to visit Denver and when we would have to come back to Houston. All depends on how quickly Tyler recovers. We both have to go to a LVAD class that is mandatory, go on 3 or 4 short "outings" from the hospital, and he has to be able to walk around the 12th floor six full laps before he can be discharged. Once he is discharged I'll have to stay with Tyler until someone else learns about the LVAD. One funny side note is that I was being shown how to switch the controller's cords from the Power Base Unit (beside unit) to batteries as Tyler was being transported to have an ultra-sound and CT Scan. The nurse made a point of how important it was to always have the backup controller and batteries. After they took Tyler away, I was leaving his room and noticed the transport nurses had left the backup controller and batteries. I saw his nurse in the hallway and told her about it. She couldn't believe the transport nurses forgot to take it and I said, ".....okay, that is one demerit. Better not be another."
We are both now struggling with what the future will bring, both start thinking about the long term future, and then try to remember that the only future we can really deal with is the next day. As we struggle to try and get back some normalcy, we are also trying to still make sense of what has happened and where we are headed next. The biggest struggle is making sure I can still work, that we can keep the house, and where we will be living in 2010....Houston or Denver. These decisions will work themselves out but both Tyler and I are very anxious. I'm starting to get angry at different things that aren't really the true sources of my anger. Just going through the anger stage every now and then. Tyler will hit these stages also, but has already commented.. "how could I be mad at anyone for making this decision for me." He understands the situation we were put in and while he struggles with this major adjustment, he knows the decisions made were out of love. I've also told him about the struggles we went through in making this decision for him. We wanted Tyler to be able to have a good life again and made the best choice based on the info we received.
It sounds like the fund-raising event on December 6th is coming along. Many, many thanks to everyone that is donating items for the raffle and that are planning on attending. I've told Tyler about this and it makes him and I cry to know how much support we are receiving. I truly hope that this is good karma coming back to us.
I hope everyone has a good Thanksgiving and that this blog has not been to overwhelming for people to read. I'm truly looking forward to Tyler writing on this blog and things finally calming down enough to spend actual quality time with Tyler.
Robert
Moving Up and the Five Stages
11/23/2009
First, thanks to everyone who has left comments on the blog. I do get to see them but can't reply to them. And it will be great for Tyler to see them soon.
Another powerful day for Tyler. I walked in to see him working with Physical Therapy. Moving his arms around and lifting his legs while in his chair. I mentioned to them that he always wanted to have Jillian (from The Biggest Looser) train him. The physical therapist knows the show and said she would know how to treat Tyler now. (Ha, ha, my revenge!) Tyler smiled his sly smile. They had him stand up while they blocked his feet. He did well but 30 seconds was extremely tough for him to do. He was also having some difficulty ascertaining left from right. But other than that he was doing well. A speech therapist also came by to work with Tyler and test his speech.
I was told an order had been put in to move him up to the "12th floor". I was shocked. He is progressing very well. The 8th floor nurses said they were happy for him but really enjoyed working with him over the past 3 or 4 days. The social worker, Stephanie, came in to see Tyler and told him how good it is to be moving to the 12th floor as it was next step to leaving the hospital. Tyler also mentioned his heart surgery and referred to it as his by-pass surgery. Stephanie told him he didn't have a bypass but had a device implanted to help his heart pump his blood.
I was alone with Tyler before they moved him and he asked how he was supposed to get to the 12th floor. I didn't understand the question and asked what he meant. "I can't even stand for 30 seconds and I'm on the 8th floor. How am I supposed to get all the way to the 12th floor?" I admit I laughed a little. I told him that while he was changing rooms, he was keeping the same bed and that he would get to take another "bed ride" through the hospital. He also asked what Stephanie meant about the 12th floor begin close to the exit. Stephanie talks pretty fast and while it looks like Tyler is understanding it all, he still needs time to process. I explained that the 12th floor was the last floor he would be on before he could leave the hospital. "Oh, great." I then had to explain that leaving the hospital did not equal going back to Denver, and that we would have to see what the next few weeks would bring. "Oh."
When I visited him on the 12th floor he was in decent spirits. Completely exhausted, but in good spirits. My mother was with me and Tyler said to the cardiac rehab nurse, "that is my wife". (Again with that wise-ass smile). The nurse looked at my Mom a bit bewildered, and I responded, "I'll be damned, I'm lugging all your stuff from the 8th floor to the 12th floor, handling paper work, trying to have my business meeting, and taking care of you. Who's the wife!" Tyler and I laughed.
Stephanie visited again with Tyler and I and the surgery discussion came up again. I could tell Tyler and Stephanie were confusing each other so I finally said to Tyler, "you did have a triple bypass, but you also had a pump implanted to help circulate your blood." Stephanie hadn't realized he had also had bypass surgery and Tyler was starting to realize he had more than just bypass surgery. Stephanie went off to get Tyler a print out about his HeartMate II LVAD device.
I had a business meeting (phone call) with my business partners so I told him I would be back and he could take a nap.
When I saw him again in the afternoon we talked some more and went over his food choices for breakfast, lunch, and dinner. By the way, the feeding tube is gone! This helps his voice sound more normal. He then began to look at the cards he was sent and the e-greetings. He got choked up and I asked what was wrong. He said he was noticing the dates of the e-greetings and it was overwhelming to him how long it has been. He then asked, "what happened?" I looked at him, took a deep breath, and asked "..are you sure you want to hear this?" "Yes."
I began by asking him some questions to try and figure out what he remembered. He somewhat remembered Bill, Heidi, and DJ coming over to the house to go to the airport. He also remembered the flamingos and iguanas at the resort and that we liked the resort. I began telling him the story of Sunday and that we were having a great time sitting by the pool and beach, drinking virgin fruity drinks, and that Heidi and him went snorkeling. He also remembered that we went to the lobby to play cards before dinner. As I began to tell him what happened that evening I began to cry a bit uncontrollably. He reached out and grabbed my hand and was crying also. We got as far as being at the clinic preparing for the air ambulance flight. At this point his food was arriving or something, and I said that was all we could do for tonight and to let that absorb. He knows how upset I am and said "..I love you so much." We held on for a minute and then started to move on. Retelling the story was so much more difficult than I had imagined and made me understand the movie cliche of "i had to re-live the event." I really had to re-live the event with Tyler. My mom was trying to take notes at the request of Tyler, but was asking for clarifications as I was telling the story. I finally said that it was in the blog and Tyler could read it soon. I couldn't re-live the story and re-live writing it at the same time.
My mother and I finally left to get back to the apartment. There was a Houston Texans vs Tennessee Titans game that night and the light rail was packed. We finally squeezed into one of the trains and got back to the apartment. I talked to his mom and sister and let them know they could call him. The nurses want him to still go slow with phone calls. Tyler then called the apartment. Weird! I talked to him and asked how his phone call with his sister went. He said it was hard and that he didn't know he had died. I told him that he did technically die, but he was back now. He then switched into Tyler mode again talking about how he didn't know how to work the TV remote and it was "just ridiculous..." This is typical Tyler and made me laugh. I told him to hit the nurse button and they would explain it to him. Ugh! I'm still technical support! He then said, "...well, the reason I really called is I wanted to make sure you knew about the meeting on Tuesday about 'my pump'". Of course he doesn't know that the "meeting" is a mandatory class I have to go to about "his pump", which is a class for the caretakers of the patients that have this LVAD. I said I did know about the class and was going to the "meeting" tomorrow. He also told me that a volunteer had come in and prayed with him, which he said was really good. I also told him to look at his left wrist and the wrist band with my name on it. I let him know that Bill and Heidi had gotten a couple of wrist bands made while still in Mexico and that ours had his name and a heart on them. I said, "....Heidi said that if Lance Armstrong can have a wrist band then so can Tyler". Tyler said that was so sweet. I of course said "...what the hell? I didn't get wristbands made for me during cancer!" He laughed with me. He then said that he was going to finish his cereal, get his pain meds, and go to bed.
As I was thinking about today I realized that I had always thought that the 5 stages of coping was something you did about an event and then it was over. What I've come to realize is that we are going to be going through the 5 stages on a daily basis. Each day brings all the 5 stages but also hope, fear, laughter, sadness, and acceptance.
His family is sending some money so that I can get Tyler a mini-laptop he can use to read/write the blog and start emailing again. Before that I'll continue to fill him in on the past month and while excruciating for both of us, I'm very impressed that Tyler wants to know and is handling it as best as one could expect.
Tyler also seems to be at peace with the fact that the house and animals are being taken care of and that we have some big decisions to make. He still is having problems writing and standing, but he continues to improve every day. It is amazing to watch him struggle with these seemingly minor steps and yet know how huge each step is for him. He is strong and determined and I'm looking forward (although nervously) to him leaving the hospital in the next 3 to 4 weeks.
Nicole is coming out this Friday, the same day my mother goes back. This is going to be really good for Tyler as he has already said, "...well I hope people visit!" I said that he needs to remember that he is in Houston. My mom could tell I was getting tired trying to help Tyler with his menu choices. She stepped up to the plate and "nagged" Tyler the way only a mother can to finish making his choices. I'm able to bring in some clothes and stuff for him on Tuesday and he is very happy about that.
Robert
First, thanks to everyone who has left comments on the blog. I do get to see them but can't reply to them. And it will be great for Tyler to see them soon.
Another powerful day for Tyler. I walked in to see him working with Physical Therapy. Moving his arms around and lifting his legs while in his chair. I mentioned to them that he always wanted to have Jillian (from The Biggest Looser) train him. The physical therapist knows the show and said she would know how to treat Tyler now. (Ha, ha, my revenge!) Tyler smiled his sly smile. They had him stand up while they blocked his feet. He did well but 30 seconds was extremely tough for him to do. He was also having some difficulty ascertaining left from right. But other than that he was doing well. A speech therapist also came by to work with Tyler and test his speech.
I was told an order had been put in to move him up to the "12th floor". I was shocked. He is progressing very well. The 8th floor nurses said they were happy for him but really enjoyed working with him over the past 3 or 4 days. The social worker, Stephanie, came in to see Tyler and told him how good it is to be moving to the 12th floor as it was next step to leaving the hospital. Tyler also mentioned his heart surgery and referred to it as his by-pass surgery. Stephanie told him he didn't have a bypass but had a device implanted to help his heart pump his blood.
I was alone with Tyler before they moved him and he asked how he was supposed to get to the 12th floor. I didn't understand the question and asked what he meant. "I can't even stand for 30 seconds and I'm on the 8th floor. How am I supposed to get all the way to the 12th floor?" I admit I laughed a little. I told him that while he was changing rooms, he was keeping the same bed and that he would get to take another "bed ride" through the hospital. He also asked what Stephanie meant about the 12th floor begin close to the exit. Stephanie talks pretty fast and while it looks like Tyler is understanding it all, he still needs time to process. I explained that the 12th floor was the last floor he would be on before he could leave the hospital. "Oh, great." I then had to explain that leaving the hospital did not equal going back to Denver, and that we would have to see what the next few weeks would bring. "Oh."
When I visited him on the 12th floor he was in decent spirits. Completely exhausted, but in good spirits. My mother was with me and Tyler said to the cardiac rehab nurse, "that is my wife". (Again with that wise-ass smile). The nurse looked at my Mom a bit bewildered, and I responded, "I'll be damned, I'm lugging all your stuff from the 8th floor to the 12th floor, handling paper work, trying to have my business meeting, and taking care of you. Who's the wife!" Tyler and I laughed.
Stephanie visited again with Tyler and I and the surgery discussion came up again. I could tell Tyler and Stephanie were confusing each other so I finally said to Tyler, "you did have a triple bypass, but you also had a pump implanted to help circulate your blood." Stephanie hadn't realized he had also had bypass surgery and Tyler was starting to realize he had more than just bypass surgery. Stephanie went off to get Tyler a print out about his HeartMate II LVAD device.
I had a business meeting (phone call) with my business partners so I told him I would be back and he could take a nap.
When I saw him again in the afternoon we talked some more and went over his food choices for breakfast, lunch, and dinner. By the way, the feeding tube is gone! This helps his voice sound more normal. He then began to look at the cards he was sent and the e-greetings. He got choked up and I asked what was wrong. He said he was noticing the dates of the e-greetings and it was overwhelming to him how long it has been. He then asked, "what happened?" I looked at him, took a deep breath, and asked "..are you sure you want to hear this?" "Yes."
I began by asking him some questions to try and figure out what he remembered. He somewhat remembered Bill, Heidi, and DJ coming over to the house to go to the airport. He also remembered the flamingos and iguanas at the resort and that we liked the resort. I began telling him the story of Sunday and that we were having a great time sitting by the pool and beach, drinking virgin fruity drinks, and that Heidi and him went snorkeling. He also remembered that we went to the lobby to play cards before dinner. As I began to tell him what happened that evening I began to cry a bit uncontrollably. He reached out and grabbed my hand and was crying also. We got as far as being at the clinic preparing for the air ambulance flight. At this point his food was arriving or something, and I said that was all we could do for tonight and to let that absorb. He knows how upset I am and said "..I love you so much." We held on for a minute and then started to move on. Retelling the story was so much more difficult than I had imagined and made me understand the movie cliche of "i had to re-live the event." I really had to re-live the event with Tyler. My mom was trying to take notes at the request of Tyler, but was asking for clarifications as I was telling the story. I finally said that it was in the blog and Tyler could read it soon. I couldn't re-live the story and re-live writing it at the same time.
My mother and I finally left to get back to the apartment. There was a Houston Texans vs Tennessee Titans game that night and the light rail was packed. We finally squeezed into one of the trains and got back to the apartment. I talked to his mom and sister and let them know they could call him. The nurses want him to still go slow with phone calls. Tyler then called the apartment. Weird! I talked to him and asked how his phone call with his sister went. He said it was hard and that he didn't know he had died. I told him that he did technically die, but he was back now. He then switched into Tyler mode again talking about how he didn't know how to work the TV remote and it was "just ridiculous..." This is typical Tyler and made me laugh. I told him to hit the nurse button and they would explain it to him. Ugh! I'm still technical support! He then said, "...well, the reason I really called is I wanted to make sure you knew about the meeting on Tuesday about 'my pump'". Of course he doesn't know that the "meeting" is a mandatory class I have to go to about "his pump", which is a class for the caretakers of the patients that have this LVAD. I said I did know about the class and was going to the "meeting" tomorrow. He also told me that a volunteer had come in and prayed with him, which he said was really good. I also told him to look at his left wrist and the wrist band with my name on it. I let him know that Bill and Heidi had gotten a couple of wrist bands made while still in Mexico and that ours had his name and a heart on them. I said, "....Heidi said that if Lance Armstrong can have a wrist band then so can Tyler". Tyler said that was so sweet. I of course said "...what the hell? I didn't get wristbands made for me during cancer!" He laughed with me. He then said that he was going to finish his cereal, get his pain meds, and go to bed.
As I was thinking about today I realized that I had always thought that the 5 stages of coping was something you did about an event and then it was over. What I've come to realize is that we are going to be going through the 5 stages on a daily basis. Each day brings all the 5 stages but also hope, fear, laughter, sadness, and acceptance.
His family is sending some money so that I can get Tyler a mini-laptop he can use to read/write the blog and start emailing again. Before that I'll continue to fill him in on the past month and while excruciating for both of us, I'm very impressed that Tyler wants to know and is handling it as best as one could expect.
Tyler also seems to be at peace with the fact that the house and animals are being taken care of and that we have some big decisions to make. He still is having problems writing and standing, but he continues to improve every day. It is amazing to watch him struggle with these seemingly minor steps and yet know how huge each step is for him. He is strong and determined and I'm looking forward (although nervously) to him leaving the hospital in the next 3 to 4 weeks.
Nicole is coming out this Friday, the same day my mother goes back. This is going to be really good for Tyler as he has already said, "...well I hope people visit!" I said that he needs to remember that he is in Houston. My mom could tell I was getting tired trying to help Tyler with his menu choices. She stepped up to the plate and "nagged" Tyler the way only a mother can to finish making his choices. I'm able to bring in some clothes and stuff for him on Tuesday and he is very happy about that.
Robert
Sunday, November 22, 2009
Hello Tyler
11/22/2009
Tyler has made very good progress the past few days. No catheter, less IV's, and is starting to pull things together. Some things are still confusing but he knows he is in Houston and has had some type of heart surgery. He is concerned about bills, work, the animals, on and on. Reminds me of me during the first week of this crisis. I tried to reassure him that we would make it through but only day by day.
He is starting to bounce off the walls wanting his phone and saying he is bored. His phone is on the way and I got him a hand held poker game and his iPod. It will still be a while before the nurses are going to allow him to make calls.
This afternoon they didn't have to lift him from his chair back to the bed. He, with support, was able to stand and then be lowered to the bed. Physical therapy will be back on Monday to keep working with him. He is asking a lot of questions and trying to soak it all in. He got sad twice while we were talking but for the majority of the visit he was doing fine. He is not eating much and he may be given medicine to help his appetite.
I said to him, "Do you remember the blog I did about my cancer?".
Tyler: "Yeah. I have one now?".
Robert: "Yep!"
Tyler: "good."
He has shown interest in starting to take over the blog at some point. Of course this would mean that he will be reading the events he has forgotten. He was surprised that we were in Cozumel only for one day. I told him we had a good day up until the attack. He seemed to remember that his phone would be coming from Verizon and would need to be signed for. I had to tell him that Bill and Heidi had already retrieved his phone from the plane he left it on. But what he was remembering is that he had made a call to Verizon about his lost phone and at the time Verizon was going to have to ship him a new one. I don't know if he will remember/realize more fragments from the trip or not.
I also wanted to thank Nicole Bauman for wanting to host a fundraiser. This is one of the first things she talked about when she heard the news. She has it scheduled for December 6th at Rock Bottom Brewery (Tyler's old restaurant). She is going to have a raffle and if you know of any donations, please let her know.
My favorite part of the evening was just sitting next to Tyler watching the Sunday night football game for a little bit. My first goal has been achieved.....
Robert
Tyler has made very good progress the past few days. No catheter, less IV's, and is starting to pull things together. Some things are still confusing but he knows he is in Houston and has had some type of heart surgery. He is concerned about bills, work, the animals, on and on. Reminds me of me during the first week of this crisis. I tried to reassure him that we would make it through but only day by day.
He is starting to bounce off the walls wanting his phone and saying he is bored. His phone is on the way and I got him a hand held poker game and his iPod. It will still be a while before the nurses are going to allow him to make calls.
This afternoon they didn't have to lift him from his chair back to the bed. He, with support, was able to stand and then be lowered to the bed. Physical therapy will be back on Monday to keep working with him. He is asking a lot of questions and trying to soak it all in. He got sad twice while we were talking but for the majority of the visit he was doing fine. He is not eating much and he may be given medicine to help his appetite.
I said to him, "Do you remember the blog I did about my cancer?".
Tyler: "Yeah. I have one now?".
Robert: "Yep!"
Tyler: "good."
He has shown interest in starting to take over the blog at some point. Of course this would mean that he will be reading the events he has forgotten. He was surprised that we were in Cozumel only for one day. I told him we had a good day up until the attack. He seemed to remember that his phone would be coming from Verizon and would need to be signed for. I had to tell him that Bill and Heidi had already retrieved his phone from the plane he left it on. But what he was remembering is that he had made a call to Verizon about his lost phone and at the time Verizon was going to have to ship him a new one. I don't know if he will remember/realize more fragments from the trip or not.
I also wanted to thank Nicole Bauman for wanting to host a fundraiser. This is one of the first things she talked about when she heard the news. She has it scheduled for December 6th at Rock Bottom Brewery (Tyler's old restaurant). She is going to have a raffle and if you know of any donations, please let her know.
My favorite part of the evening was just sitting next to Tyler watching the Sunday night football game for a little bit. My first goal has been achieved.....
Robert
STEMI - ST Elevation Myocardial Infarction
11/21/2009
Tyler is starting to retain more of the current situation. Memory still foggy. Understanding what month it is, that he is on a transplant list, and that DJ is at the house taking care of the animals. Showed him Karen's (our neighbor) card that she sent from "the kids" (Toby, Bowser, Max, and Marlow). Made him cry a bit. Understands that the kids are fine. Desperately wants to go back to work, call clients, and keeps thinking he can work from home "tomorrow".
He made a comment about the LVAD controller next to him (didn't know what it was) and thought that he didn't need the LVAD power unit at the end of the bed anymore. I told him that he did need the machine and controller and that it was providing power to the pump in his heart. He seemed to accept this, but it doesn't appear that he knows he will be hooked up to these two machines for a very long time.
He was put into a chair for most of yesterday so he can get used to sitting. Is having the catheter removed and some more IV's removed. On a liquid diet and is swallowing pills instead of having them crushed up and put down his feeding tube. He still is very, very thin and a bit bony. I'm hoping he is able to start eating more and gaining back some weight. He weighs around 150 lbs., when normally he weighs around 175 lbs.
Went to the symposium at the hospital. Larry Brown (RN, BSN, STEMI Coordinator) presented information on how to recognize an ST Elevation Myocardial Infarction and proper reading of an EKG. At the end he presented some case studies for the audience (about 150 nurses) to figure out how to read the EKG he was presenting and to see angiograms of the heart begin studied. Tyler's case was presented last. "44 year old male on vacation in Cozumel. Complained of chest pain....flown to Houston...." He then showed the EKG and the audience responded by reading the EKG. He then showed the moving angiogram of Tyler's left side of his heart, before and after being in the cath lab. The audience actually gasped. He then explained that the patient was on the 8th floor recovering from LVAD surgery and doing very well for his condition. It was another surreal experience watching Tyler's left heart just sitting there, not moving.
When I went back for the 5pm visitation, I heard a bunch of nurses in Tyler's room talking to Tyler. They were negotiating with Tyler about putting him back in the bed. I heard one nurse say, "..see, there is your friend right now. And you said he wasn't coming back." Tyler responded that he figured if I wasn't back by 5pm, I wasn't going to make it. He wanted to wait so I could see him sitting in the chair.
He told me that the nurses were telling him what had been going on the past month. After he asked, I started filling him in on the events of Mexico. He was surprised that we only got one day in Cozumel and didn't know that we had gone with Bill and Heidi. I got as far as telling him about getting him to Houston, but stopped because it looked like it was becoming to much information. I did explain that we haven't been home for a month so far. He didn't like that but seemed to take it in stride.
He is worried about things "falling through the cracks". I let him know that things were being handled as best they could be, but that this was going to be a huge change to our lives and that we both could only take things day by day. Also, that his primary job was to eat and get healthy.
After he was moved back to the bed, I noticed that his wires were tangled and that his monitor was showing wild movements of his heart. When the nurse came back in I was looking at his right side. She asked what I was doing and I responded that I was making sure his drive line wasn't bent. She seemed to change her attitude towards me (from being a little to much Nurse Ratchet!). I also asked about the monitor and she explained a lead had come loose and not to worry. Hmmm, not to worry.....I wish!
At this point I'm hoping that he continues to fill in the blanks as best as he can and maybe sometime next week really "wakes" up. I also know that when this happens it is going to be extremely hard for him. He will continue physical therapy and once he can take enough steps on his own, should be moved to the 12th floor. I'm looking forward to this as the visiting times are less restrictive and I can spend more time with him.
Robert
Tyler is starting to retain more of the current situation. Memory still foggy. Understanding what month it is, that he is on a transplant list, and that DJ is at the house taking care of the animals. Showed him Karen's (our neighbor) card that she sent from "the kids" (Toby, Bowser, Max, and Marlow). Made him cry a bit. Understands that the kids are fine. Desperately wants to go back to work, call clients, and keeps thinking he can work from home "tomorrow".
He made a comment about the LVAD controller next to him (didn't know what it was) and thought that he didn't need the LVAD power unit at the end of the bed anymore. I told him that he did need the machine and controller and that it was providing power to the pump in his heart. He seemed to accept this, but it doesn't appear that he knows he will be hooked up to these two machines for a very long time.
He was put into a chair for most of yesterday so he can get used to sitting. Is having the catheter removed and some more IV's removed. On a liquid diet and is swallowing pills instead of having them crushed up and put down his feeding tube. He still is very, very thin and a bit bony. I'm hoping he is able to start eating more and gaining back some weight. He weighs around 150 lbs., when normally he weighs around 175 lbs.
Went to the symposium at the hospital. Larry Brown (RN, BSN, STEMI Coordinator) presented information on how to recognize an ST Elevation Myocardial Infarction and proper reading of an EKG. At the end he presented some case studies for the audience (about 150 nurses) to figure out how to read the EKG he was presenting and to see angiograms of the heart begin studied. Tyler's case was presented last. "44 year old male on vacation in Cozumel. Complained of chest pain....flown to Houston...." He then showed the EKG and the audience responded by reading the EKG. He then showed the moving angiogram of Tyler's left side of his heart, before and after being in the cath lab. The audience actually gasped. He then explained that the patient was on the 8th floor recovering from LVAD surgery and doing very well for his condition. It was another surreal experience watching Tyler's left heart just sitting there, not moving.
When I went back for the 5pm visitation, I heard a bunch of nurses in Tyler's room talking to Tyler. They were negotiating with Tyler about putting him back in the bed. I heard one nurse say, "..see, there is your friend right now. And you said he wasn't coming back." Tyler responded that he figured if I wasn't back by 5pm, I wasn't going to make it. He wanted to wait so I could see him sitting in the chair.
He told me that the nurses were telling him what had been going on the past month. After he asked, I started filling him in on the events of Mexico. He was surprised that we only got one day in Cozumel and didn't know that we had gone with Bill and Heidi. I got as far as telling him about getting him to Houston, but stopped because it looked like it was becoming to much information. I did explain that we haven't been home for a month so far. He didn't like that but seemed to take it in stride.
He is worried about things "falling through the cracks". I let him know that things were being handled as best they could be, but that this was going to be a huge change to our lives and that we both could only take things day by day. Also, that his primary job was to eat and get healthy.
After he was moved back to the bed, I noticed that his wires were tangled and that his monitor was showing wild movements of his heart. When the nurse came back in I was looking at his right side. She asked what I was doing and I responded that I was making sure his drive line wasn't bent. She seemed to change her attitude towards me (from being a little to much Nurse Ratchet!). I also asked about the monitor and she explained a lead had come loose and not to worry. Hmmm, not to worry.....I wish!
At this point I'm hoping that he continues to fill in the blanks as best as he can and maybe sometime next week really "wakes" up. I also know that when this happens it is going to be extremely hard for him. He will continue physical therapy and once he can take enough steps on his own, should be moved to the 12th floor. I'm looking forward to this as the visiting times are less restrictive and I can spend more time with him.
Robert
Friday, November 20, 2009
And then the next day
11/20/2009
As I was hoping the next day was better. Tyler does better in the morning after he has had some rest (and probably me to). He is still foggy but not as bad as yesterday. The nurses started to comment how Tyler is being satirical and funny with them. The social worker told Tyler that he was on Seroquel because he might be experiencing anxiety. Tyler's response: "You think!".
In the morning he thought we were at Mary Alice's house. This was the name of the nurse on duty. Also thought it was Wednesday, but when I told him to look at the board he saw that I had written that it was Friday, the 20th of November. Seemed like it amazed him it was Friday and not Wednesday, but didn't faze him that it was November.
In the afternoon, the physical therapy nurses came by and got him to be able to sit up on the edge of the bed. This had worn him out completely. It is amazing how much of his muscles have atrophied.
A nurse from the cath lab that had been there when Tyler was first brought in came by to see Tyler. He wanted to see the progress Tyler had made and to let Tyler know that Tyler's case was being presented on Saturday to a large group of doctors. The nurse told Tyler that after an accident, he was in the hospital and in recovery for over a year and that if Tyler wants to rebuild your life, he can. Tyler seemed to stay very focused on what he was saying.
I bought him a ball to work on his hand strength. He is now being given a liquid diet (thick apple juice, soup, thick tomato juice), but is still being primarily fed through the feeding tube. Tyler is very thin.
He also talked about Toby again and wondered if Toby was okay. He wanted to see Toby on Saturday, but I explained that Toby was in Denver with DJ and was being taken care of. He then came back to reality and said that he understood, but missed Toby.
The physical therapy really wore him out and he went to sleep pretty quick. I stayed with him awhile and then finally had to leave. Tyler seemed to only "check out" a couple of times while I was talking to him. He continues to want to get back to work, walk the dogs, and more. The nurses and doctors are bringing him up to speed on the medical side and I will have to start bringing him up to date on the personal side. To be honest, I'm not quite sure how slow to go as there are some very large decisions looming. But for now, still 'kid gloves'.
Robert
As I was hoping the next day was better. Tyler does better in the morning after he has had some rest (and probably me to). He is still foggy but not as bad as yesterday. The nurses started to comment how Tyler is being satirical and funny with them. The social worker told Tyler that he was on Seroquel because he might be experiencing anxiety. Tyler's response: "You think!".
In the morning he thought we were at Mary Alice's house. This was the name of the nurse on duty. Also thought it was Wednesday, but when I told him to look at the board he saw that I had written that it was Friday, the 20th of November. Seemed like it amazed him it was Friday and not Wednesday, but didn't faze him that it was November.
In the afternoon, the physical therapy nurses came by and got him to be able to sit up on the edge of the bed. This had worn him out completely. It is amazing how much of his muscles have atrophied.
A nurse from the cath lab that had been there when Tyler was first brought in came by to see Tyler. He wanted to see the progress Tyler had made and to let Tyler know that Tyler's case was being presented on Saturday to a large group of doctors. The nurse told Tyler that after an accident, he was in the hospital and in recovery for over a year and that if Tyler wants to rebuild your life, he can. Tyler seemed to stay very focused on what he was saying.
I bought him a ball to work on his hand strength. He is now being given a liquid diet (thick apple juice, soup, thick tomato juice), but is still being primarily fed through the feeding tube. Tyler is very thin.
He also talked about Toby again and wondered if Toby was okay. He wanted to see Toby on Saturday, but I explained that Toby was in Denver with DJ and was being taken care of. He then came back to reality and said that he understood, but missed Toby.
The physical therapy really wore him out and he went to sleep pretty quick. I stayed with him awhile and then finally had to leave. Tyler seemed to only "check out" a couple of times while I was talking to him. He continues to want to get back to work, walk the dogs, and more. The nurses and doctors are bringing him up to speed on the medical side and I will have to start bringing him up to date on the personal side. To be honest, I'm not quite sure how slow to go as there are some very large decisions looming. But for now, still 'kid gloves'.
Robert
Still Foggy
11/19/2009
This morning Tyler had the remaining chest drainage tubes removed. He was glad the tubes were out since they were very uncomfortable. A nurse showed me where the ice chips, crackers, soda, etc. were and when he is able I can just go get these for him. I'm trying to adjust to this new hospital floor. The nurses don't talk a whole lot and aren't around much. Nice and bad at the same time. I get to spend more time just talking with Tyler, but don't exactly know what he can and can't do or his status on things. I just have to adjust. Talked to one nurse who said I can bug them whenever I need to.
They will do a test to see how well he can chew and swallow so that they can start moving him off the feeding tube.
He is retaining more, but still very confused. He seemed to remember that we are in Houston, but then commented how weird the weather was for this time of year (lapsed back to thinking we were in Denver). Was upset that we missed Thanksgiving dinner at Kelley's. He wants his phone desperately and wants to go home. He sneakily asked me if we could go have a cigarette. I told him that we don't smoke anymore. He responded: "oh, good". He knows he had a surgery and knows he is going to need another. I told him that was far into the future and not to worry about it. He is coming up with a plan on how he is going to work when he gets out of the hospital. "20 hours a week at first just like Warren (contractor/friend) did after his heart surgery." He misses the house and family. Wants to be in his own bed. Then he was worried about his car. He also told me that he had talked with his mother and his uncle. He even thought one of the doctors was Wilfredo (a friend from Puerto Rico). I also had to get on to him about winking at the nurse, Edith!
The afternoon was harder. I think I tricked myself into thinking that he would be clearer and clearer, but he seemed more confused. When he had lucid moments they were sad. He said the hardest thing was the lack of intimacy, since I couldn't stay with him for very long on my visits. He mentioned he is in pain, but he is also moving his legs more. His cardiologist, Dr. Sherron, happened to be there so I asked if this was normal at this time. He said yes, but then became a doctor and said they just won't know how much he will retain of the old Tyler. Didn't need to hear that! I'm very scared for Tyler (and me). I need Tyler to be clear headed, out of the bed, back to work, back at the house, back to his old voice......normal. I also know that once he is clear headed, he may become very depressed about the situation. One day at a time.
The doctor commented to Tyler that he had been in a hospital bed for a month, then looked at me and said I would know better. I responded immediately, "3 weeks and 4 days". He also told Tyler that he would probably be in the hospital for another month. I found a lot of e-greetings that have been sent to us and felt bad that I couldn't read them to him just yet. He is still to confused. I just can't get his bewildered look out of my head. Maybe mornings are just better since he gets rest over night. As I left he asked for the lights to be turned off since he was resigned to just going to sleep.
I left the hospital feeling very depressed, confused, and sad. Finally I called Janet (from Arkansas who's husband went through this) and checked to see if this was normal from her point of view. She said to be patient and the fogginess would eventually lift. It may be a few more days or a week.
I've started writing the current date on a dry-erase board that he can see from his bed. I'm also going to see if I can start helping him with moving his arms, legs, and fingers. He has lost a lot of weight and muscle tone. Still looks good, it is just those eyes.
I am looking forward to when Tyler realizes just how many people are out there supporting him. Again, I can't thank everyone enough. When I got back to the apartment I cried with my mother and finally said, "what did we do to deserve this year!". A moment of anger that I got out of my system. On to the next day!
Robert
This morning Tyler had the remaining chest drainage tubes removed. He was glad the tubes were out since they were very uncomfortable. A nurse showed me where the ice chips, crackers, soda, etc. were and when he is able I can just go get these for him. I'm trying to adjust to this new hospital floor. The nurses don't talk a whole lot and aren't around much. Nice and bad at the same time. I get to spend more time just talking with Tyler, but don't exactly know what he can and can't do or his status on things. I just have to adjust. Talked to one nurse who said I can bug them whenever I need to.
They will do a test to see how well he can chew and swallow so that they can start moving him off the feeding tube.
He is retaining more, but still very confused. He seemed to remember that we are in Houston, but then commented how weird the weather was for this time of year (lapsed back to thinking we were in Denver). Was upset that we missed Thanksgiving dinner at Kelley's. He wants his phone desperately and wants to go home. He sneakily asked me if we could go have a cigarette. I told him that we don't smoke anymore. He responded: "oh, good". He knows he had a surgery and knows he is going to need another. I told him that was far into the future and not to worry about it. He is coming up with a plan on how he is going to work when he gets out of the hospital. "20 hours a week at first just like Warren (contractor/friend) did after his heart surgery." He misses the house and family. Wants to be in his own bed. Then he was worried about his car. He also told me that he had talked with his mother and his uncle. He even thought one of the doctors was Wilfredo (a friend from Puerto Rico). I also had to get on to him about winking at the nurse, Edith!
The afternoon was harder. I think I tricked myself into thinking that he would be clearer and clearer, but he seemed more confused. When he had lucid moments they were sad. He said the hardest thing was the lack of intimacy, since I couldn't stay with him for very long on my visits. He mentioned he is in pain, but he is also moving his legs more. His cardiologist, Dr. Sherron, happened to be there so I asked if this was normal at this time. He said yes, but then became a doctor and said they just won't know how much he will retain of the old Tyler. Didn't need to hear that! I'm very scared for Tyler (and me). I need Tyler to be clear headed, out of the bed, back to work, back at the house, back to his old voice......normal. I also know that once he is clear headed, he may become very depressed about the situation. One day at a time.
The doctor commented to Tyler that he had been in a hospital bed for a month, then looked at me and said I would know better. I responded immediately, "3 weeks and 4 days". He also told Tyler that he would probably be in the hospital for another month. I found a lot of e-greetings that have been sent to us and felt bad that I couldn't read them to him just yet. He is still to confused. I just can't get his bewildered look out of my head. Maybe mornings are just better since he gets rest over night. As I left he asked for the lights to be turned off since he was resigned to just going to sleep.
I left the hospital feeling very depressed, confused, and sad. Finally I called Janet (from Arkansas who's husband went through this) and checked to see if this was normal from her point of view. She said to be patient and the fogginess would eventually lift. It may be a few more days or a week.
I've started writing the current date on a dry-erase board that he can see from his bed. I'm also going to see if I can start helping him with moving his arms, legs, and fingers. He has lost a lot of weight and muscle tone. Still looks good, it is just those eyes.
I am looking forward to when Tyler realizes just how many people are out there supporting him. Again, I can't thank everyone enough. When I got back to the apartment I cried with my mother and finally said, "what did we do to deserve this year!". A moment of anger that I got out of my system. On to the next day!
Robert
Thursday, November 19, 2009
Talking, but confused
11/18/2009
I saw Tyler at the morning visitation. He has been moved to the 8th floor ICU (one notch below the CV ICU, but still ICU). His new address is: 8 Cooley A, Bed 2. He recognized me but is confused. His voice was a little better and I could understand him more.
Robert: "Do you know where you are?".
Tyler: "Ft. Wayne, Indiana". (I think this is based on hearing his family's voices)
Robert: "No. You are in a hospital in Houston".
Tyler: "Oh".
Robert: "Do you know what happened?"
Tyler: "No."
Robert: "You had a heart attack."
Tyler: "Oh. Is everyone else okay?" (he thinks there was a plane crash).
Robert: "What do you remember last?"
Tyler: "I was meeting with Anne Mounsey." (I believe that was the day before we left for Cozumel)
He was able to tell me he was cold, so I got a nurse to bring a blanket. The nurse said he had told her he was warm. I explained that Tyler bounces back and forth between hot and cold. Must be menopause! He also was fixating on bills, and I told him things were being handled. I looked at his heart beats per minute and they were getting high. Good ole Type A personality. I told him to relax, just relax. That is all he needs to do. He had yawned a bit, so slowly he started to fall back to sleep and I watched his beats per minute drop and his monitor stopped alarming.
The neurologist had seen Tyler before I got there and is still happy with his progress. I told Tyler I would be back in the afternoon.
The afternoon visit became hilarious and let me know that Tyler was becoming Tyler again. His voice was even better, but still weak and he is very confused. When I got in to the room I asked him how he was doing. "Well, I've been laying here doing nothing and you weren't here forever. I mean what am I supposed to do if you are gone all the time." Okay, Tyler is coming back. Then he went loopy. He told me that the doctor had told him that the doctor rushed surgery and that the doctor should have waited. Because the doctor rushed surgery, he was going to have to have another surgery. I think Tyler picked up that he had surgery and knows that he will eventually have to have another (when a heart becomes available). He also thought he was now in Kelley's house (his friend and business partner). He rattled off some figures because he wanted to prepare for taxes. Something about a party he needed to get ready for tomorrow. He just kept talking and talking and talking and talking.
I told him his family had been to visit and that his Mother and sister were planning on coming back. Tyler: "For Easter?". I'm not sure when he is going to realize the current date.
He asked how long it took to get home. I said 15 minutes to the place I'm staying at right now.
Robert: "Did you mean Denver?"
Tyler: "Well, yeah."
Robert: "About 20 hours."
Tyler: "That's ridiculous!" (in that typical Tyler inflection).
Of course the other lucid moment Tyler had was when I talked about the house.
Tyler: "Do you think Toby misses me?"
Robert (in my head): "Are you kidding me! Of course you would ask about Toby"
Robert (out loud): "Yes, he misses you and we'll see him soon."
The nurses have been able to start giving him ice chips finally. Still being fed through a tube.
Tyler: "You just don't know how good water tastes until you haven't had it for awhile."
My mother is in Houston now and will help a lot. I had to admit to Tyler's mom that I had lied to her about when she was coming in. His mom is worried about me and was somehow under the impression that my mom was coming in the same day they were leaving. I lied because I wanted his parents to feel okay about leaving.
So, a better day. Voice is coming back and they are already starting him on physical therapy. It is great that I can talk to him again and when I said I needed to leave, he moved his head toward me and pursed his lips for a kiss. After 3 1/2 weeks....finally!
Today was a great day!
Robert
I saw Tyler at the morning visitation. He has been moved to the 8th floor ICU (one notch below the CV ICU, but still ICU). His new address is: 8 Cooley A, Bed 2. He recognized me but is confused. His voice was a little better and I could understand him more.
Robert: "Do you know where you are?".
Tyler: "Ft. Wayne, Indiana". (I think this is based on hearing his family's voices)
Robert: "No. You are in a hospital in Houston".
Tyler: "Oh".
Robert: "Do you know what happened?"
Tyler: "No."
Robert: "You had a heart attack."
Tyler: "Oh. Is everyone else okay?" (he thinks there was a plane crash).
Robert: "What do you remember last?"
Tyler: "I was meeting with Anne Mounsey." (I believe that was the day before we left for Cozumel)
He was able to tell me he was cold, so I got a nurse to bring a blanket. The nurse said he had told her he was warm. I explained that Tyler bounces back and forth between hot and cold. Must be menopause! He also was fixating on bills, and I told him things were being handled. I looked at his heart beats per minute and they were getting high. Good ole Type A personality. I told him to relax, just relax. That is all he needs to do. He had yawned a bit, so slowly he started to fall back to sleep and I watched his beats per minute drop and his monitor stopped alarming.
The neurologist had seen Tyler before I got there and is still happy with his progress. I told Tyler I would be back in the afternoon.
The afternoon visit became hilarious and let me know that Tyler was becoming Tyler again. His voice was even better, but still weak and he is very confused. When I got in to the room I asked him how he was doing. "Well, I've been laying here doing nothing and you weren't here forever. I mean what am I supposed to do if you are gone all the time." Okay, Tyler is coming back. Then he went loopy. He told me that the doctor had told him that the doctor rushed surgery and that the doctor should have waited. Because the doctor rushed surgery, he was going to have to have another surgery. I think Tyler picked up that he had surgery and knows that he will eventually have to have another (when a heart becomes available). He also thought he was now in Kelley's house (his friend and business partner). He rattled off some figures because he wanted to prepare for taxes. Something about a party he needed to get ready for tomorrow. He just kept talking and talking and talking and talking.
I told him his family had been to visit and that his Mother and sister were planning on coming back. Tyler: "For Easter?". I'm not sure when he is going to realize the current date.
He asked how long it took to get home. I said 15 minutes to the place I'm staying at right now.
Robert: "Did you mean Denver?"
Tyler: "Well, yeah."
Robert: "About 20 hours."
Tyler: "That's ridiculous!" (in that typical Tyler inflection).
Of course the other lucid moment Tyler had was when I talked about the house.
Tyler: "Do you think Toby misses me?"
Robert (in my head): "Are you kidding me! Of course you would ask about Toby"
Robert (out loud): "Yes, he misses you and we'll see him soon."
The nurses have been able to start giving him ice chips finally. Still being fed through a tube.
Tyler: "You just don't know how good water tastes until you haven't had it for awhile."
My mother is in Houston now and will help a lot. I had to admit to Tyler's mom that I had lied to her about when she was coming in. His mom is worried about me and was somehow under the impression that my mom was coming in the same day they were leaving. I lied because I wanted his parents to feel okay about leaving.
So, a better day. Voice is coming back and they are already starting him on physical therapy. It is great that I can talk to him again and when I said I needed to leave, he moved his head toward me and pursed his lips for a kiss. After 3 1/2 weeks....finally!
Today was a great day!
Robert
Tuesday, November 17, 2009
No tube, No tracheotomy.
11/17/2009
Today was another good step forward. Tyler is more alert and drifts away less. He also had the breathing tube removed because he can breath on his own. Because of this they didn't have to due a tracheotomy. He is looking around more and had a lot of visits from the nursing staff. He is trying to talk but his vocal chords aren't ready quite yet and he barely produces a whisper. He is in a lot of pain but is hanging in there. He also keeps trying to grab his feeding tube to try and remove it. It has got to be irritating having a tube running through his nose. Until his vocal chords repair themselves he can't even have ice chips because the water may trickle into his wind pipe.
A cardiologist explained to Tyler what happened medically over the past three weeks, but he may not remember what he was told. Hopefully he will make more progress today and in the next few days be able to talk a little more. At the last visitation I read a couple of notes/cards to him, including a note from his mother. I also let him know the huge number of people thinking of him. A lot of his nurses stopped by to say hi to him and I thought .."typical Tyler, even in a coma he makes friends"! But I also think he is overwhelmed by the situation. He will probably be moved to another floor today (still an ICU) and they will begin physical therapy.
I was also shown how to change the dressing around his drive line and was given a kind-of pop quiz about the LVAD. The staff asked if I was going to LVAD class and my response was I still was trying to handle things and that I've been bugging the nurses about the LVAD already. I know they do understand but it felt like I had to remind them that I still had fires to put out, other fires to prevent, and needed to work so there could be some income coming in. While it is great that he is breathing on his own and didn't have to have a tracheotomy, I'm still concerned about his state of mind. To wake up three weeks later, be in a hospital (in Houston), having an implant, and a cord running out of him has got to be a living hell. It appears he doesn't remember going to Cozumel and it will be good to know what was the last thing he remembers so I can start to bring him up to date.
For me, I'm realizing that as he gets better our lives continue to get harder. My short term goal is to be able to watch TV with him, but with the H1N1 flu going around the visitation times are pretty restrictive. Only four times a day and only 30 minutes at a time. I'm trying to remain as strong as possible and am worried about Tyler being upset and depressed. I keep reminding myself that Tyler has quite the strong personality and will overcome this. I'm also working hard to be "normal" with Tyler. The nurses wanted me to bring in balloons, jump up and down, and be celebratory but I needed to just be with Tyler quietly. To watch him look around at all the tubes, IV's, and equipment as he tries to take it all in is disconcerting for me. I'm working on trying to be upbeat but I think since he is medically okay, my adrenaline is dropping and I'm starting to have some moments to really understand what has happened over the last three weeks and what is about to come.
Okay, I'm going to get my attitude in order and tomorrow's post better be upbeat! My mother is here today and will be able to help me with a lot of things and beat me into shape!
Robert
Today was another good step forward. Tyler is more alert and drifts away less. He also had the breathing tube removed because he can breath on his own. Because of this they didn't have to due a tracheotomy. He is looking around more and had a lot of visits from the nursing staff. He is trying to talk but his vocal chords aren't ready quite yet and he barely produces a whisper. He is in a lot of pain but is hanging in there. He also keeps trying to grab his feeding tube to try and remove it. It has got to be irritating having a tube running through his nose. Until his vocal chords repair themselves he can't even have ice chips because the water may trickle into his wind pipe.
A cardiologist explained to Tyler what happened medically over the past three weeks, but he may not remember what he was told. Hopefully he will make more progress today and in the next few days be able to talk a little more. At the last visitation I read a couple of notes/cards to him, including a note from his mother. I also let him know the huge number of people thinking of him. A lot of his nurses stopped by to say hi to him and I thought .."typical Tyler, even in a coma he makes friends"! But I also think he is overwhelmed by the situation. He will probably be moved to another floor today (still an ICU) and they will begin physical therapy.
I was also shown how to change the dressing around his drive line and was given a kind-of pop quiz about the LVAD. The staff asked if I was going to LVAD class and my response was I still was trying to handle things and that I've been bugging the nurses about the LVAD already. I know they do understand but it felt like I had to remind them that I still had fires to put out, other fires to prevent, and needed to work so there could be some income coming in. While it is great that he is breathing on his own and didn't have to have a tracheotomy, I'm still concerned about his state of mind. To wake up three weeks later, be in a hospital (in Houston), having an implant, and a cord running out of him has got to be a living hell. It appears he doesn't remember going to Cozumel and it will be good to know what was the last thing he remembers so I can start to bring him up to date.
For me, I'm realizing that as he gets better our lives continue to get harder. My short term goal is to be able to watch TV with him, but with the H1N1 flu going around the visitation times are pretty restrictive. Only four times a day and only 30 minutes at a time. I'm trying to remain as strong as possible and am worried about Tyler being upset and depressed. I keep reminding myself that Tyler has quite the strong personality and will overcome this. I'm also working hard to be "normal" with Tyler. The nurses wanted me to bring in balloons, jump up and down, and be celebratory but I needed to just be with Tyler quietly. To watch him look around at all the tubes, IV's, and equipment as he tries to take it all in is disconcerting for me. I'm working on trying to be upbeat but I think since he is medically okay, my adrenaline is dropping and I'm starting to have some moments to really understand what has happened over the last three weeks and what is about to come.
Okay, I'm going to get my attitude in order and tomorrow's post better be upbeat! My mother is here today and will be able to help me with a lot of things and beat me into shape!
Robert
Monday, November 16, 2009
Awake, almost
11/16/2009
Today was a good but odd day. I arrived at the hospital early and called in for a status. The nurse said Tyler was responding to commands and they asked him "Do you want to see Robert". He nodded his head up and down. They let me go in ahead of the normal visitation schedule. It was great to see him more alert. I gave his mom a call and told her she was about to have a long shuttle ride. I told her he was awake and alert and she was over-joyed. I think she may have considered running to the hospital instead of waiting for the shuttle.
He still fades in and out due to the drugs still in his system. They have stopped giving him any sedatives, unless he gets to agitated. He was given a clean bill of mental health by a neurologist and also had a complete CT scan. Everything looks good and he was able to complete all the tests given him by the neurologist. It is very encouraging and all his doctors were pleased. He will remain in the CardioVascular ICU for a least one more day and I'm hoping tomorrow he can get the tube out of his throat. He'll then be moved to another ICU on a different floor. Unfortunately the visiting hours are the same so I basically only get to see him for 30 minutes at a time. The nurses usually let me stay longer, but I want to be able to spend more time with him.
We saw Tyler again at 5:00 pm. His eyes were wide open. He kinda looked angry to his Mom and me, but I think he was more confused/scared. His Mom and Dad talked to him mostly. I just kind-of stared for a while. At the end, after his Mom and Dad stepped out of the little room, I looked directly at Tyler and told him he was going to have to work at this, but he will be fine. I asked if he understood and after about 20 seconds he nodded his head. I think at this point he is just coming to realize he is in a hospital and doesn't understand what is going on. His eyes seemed to keep looking around at all the equipment. He still can't move or talk and I'm sure that must be a nightmare for him. I don't know if he knows it has been three weeks.
For me, while being great that he is more alert, it was a busy day like all the others.
I wanted to stay next to Tyler all day, but what is hard is that there are so many things to stay on top of and I need to do some work for my business. I'm starting to understand the thing that makes this so hard. I'm trying to set up a life for Tyler and me in Houston for now and I want to just be with Tyler by his bed side. But the reality is that I need to work while trying to get things going in Houston. I'm basically just putting out fires all day and trying to prevent new ones.
His parents leave tomorrow with heavy hearts. It is going to be a very, very hard day for them. They wanted me to express to everyone how much they appreciated the thoughts and prayers. I've been able to share the blog and your comments with them. They have been wonderful to me and we have had some interesting days! They explored yesterday and found a tunnel running between St. Luke and Methodist hospital. We took the tunnel to go to the Methodist hospital cafeteria which is much better than St. Luke's. Going through the tunnels with them was hilarious. We weren't sure at times where we were or how to get there. We eventually found the cafeteria and even found our way back to St. Luke. They also had a lot of fun playing in the tunnels. I'll miss them, but his mother and sister are planning on coming back to Houston in a few weeks or so.
They also wanted me to post their address and email.
donswoverland@verizon.net.
8725 Crosier
Ft. Wayne, IN 46825
I also ran into Mitzy again (the lady from the first night at the hospital). Her husband is not doing well which was sad. She asked about Tyler and it was a little odd to say he was doing pretty good so far and waking up. It is interesting that I'm developing a group of "disaster" friends here in Houston. I already had a disaster buddy in Colorado for this year. What the .....?! Is 2009 over yet!?
Thanks for all the comments on the blog. I'm looking forward to sharing these with Tyler!
Robert
Today was a good but odd day. I arrived at the hospital early and called in for a status. The nurse said Tyler was responding to commands and they asked him "Do you want to see Robert". He nodded his head up and down. They let me go in ahead of the normal visitation schedule. It was great to see him more alert. I gave his mom a call and told her she was about to have a long shuttle ride. I told her he was awake and alert and she was over-joyed. I think she may have considered running to the hospital instead of waiting for the shuttle.
He still fades in and out due to the drugs still in his system. They have stopped giving him any sedatives, unless he gets to agitated. He was given a clean bill of mental health by a neurologist and also had a complete CT scan. Everything looks good and he was able to complete all the tests given him by the neurologist. It is very encouraging and all his doctors were pleased. He will remain in the CardioVascular ICU for a least one more day and I'm hoping tomorrow he can get the tube out of his throat. He'll then be moved to another ICU on a different floor. Unfortunately the visiting hours are the same so I basically only get to see him for 30 minutes at a time. The nurses usually let me stay longer, but I want to be able to spend more time with him.
We saw Tyler again at 5:00 pm. His eyes were wide open. He kinda looked angry to his Mom and me, but I think he was more confused/scared. His Mom and Dad talked to him mostly. I just kind-of stared for a while. At the end, after his Mom and Dad stepped out of the little room, I looked directly at Tyler and told him he was going to have to work at this, but he will be fine. I asked if he understood and after about 20 seconds he nodded his head. I think at this point he is just coming to realize he is in a hospital and doesn't understand what is going on. His eyes seemed to keep looking around at all the equipment. He still can't move or talk and I'm sure that must be a nightmare for him. I don't know if he knows it has been three weeks.
For me, while being great that he is more alert, it was a busy day like all the others.
I wanted to stay next to Tyler all day, but what is hard is that there are so many things to stay on top of and I need to do some work for my business. I'm starting to understand the thing that makes this so hard. I'm trying to set up a life for Tyler and me in Houston for now and I want to just be with Tyler by his bed side. But the reality is that I need to work while trying to get things going in Houston. I'm basically just putting out fires all day and trying to prevent new ones.
His parents leave tomorrow with heavy hearts. It is going to be a very, very hard day for them. They wanted me to express to everyone how much they appreciated the thoughts and prayers. I've been able to share the blog and your comments with them. They have been wonderful to me and we have had some interesting days! They explored yesterday and found a tunnel running between St. Luke and Methodist hospital. We took the tunnel to go to the Methodist hospital cafeteria which is much better than St. Luke's. Going through the tunnels with them was hilarious. We weren't sure at times where we were or how to get there. We eventually found the cafeteria and even found our way back to St. Luke. They also had a lot of fun playing in the tunnels. I'll miss them, but his mother and sister are planning on coming back to Houston in a few weeks or so.
They also wanted me to post their address and email.
donswoverland@verizon.net.
8725 Crosier
Ft. Wayne, IN 46825
I also ran into Mitzy again (the lady from the first night at the hospital). Her husband is not doing well which was sad. She asked about Tyler and it was a little odd to say he was doing pretty good so far and waking up. It is interesting that I'm developing a group of "disaster" friends here in Houston. I already had a disaster buddy in Colorado for this year. What the .....?! Is 2009 over yet!?
Thanks for all the comments on the blog. I'm looking forward to sharing these with Tyler!
Robert
And then a better day
11/15/2009
Today was a better day. Even though today marks 3 weeks from the initial heart attack.
This Hallmark movie continues on.
We met Nurse Carlton. He was very informative and let us know that they were once again trying to get Tyler off the sedatives (fentanyl, adavan, etc.). They were now using Seroquel to keep Tyler relaxed, but it isn't a sedative. In order for them to remove the tube running down his throat, Tyler has to regain consciousness, so that he can clear his throat and breath on his own. The longer the tube is in his throat, the greater chance of vocal chord paralysis. Again, didn't want to hear that but have to be prepared.
We were introduced to Janet and David who went through a very similar experience. They were dropped into Houston (they lived in Arkansas) and David had an LVAD placed also. He was unconscious for almost two months. They showed up Friday and I was shocked. There he was walking around with a little bag holding his controller and batteries. He can talk, but very quietly and has trouble forming some words. He had a lot more complications than Tyler, so if he can recover I know Tyler can.
Tyler has begun to have more facial movements (he looks pissed!), and moved his leg and arm a little bit. We continue to talk to him and I swear he can see and hear us. He is running a temperature but is also continuing to work his bladder. A great sign. He also has a pulse that you can feel. Not insignificant. We were told he wouldn't have a pulse because the LVAD is a "continuous flow" device, so in order to check his blood pressure the hospital would have to use a Doppler method. Having a pulse means the left side of his heart is still hanging in there. What we are hoping for now is that the implant will continue to support the healing of his heart and maybe the end-game will be that Tyler will be able to have the LVAD removed and not need a transplant. We have been told that this is a slim chance but I've decided I can hope and pray for this.
He also produced two tears (one from each eye), while his mother and I were talking to him. I also have to believe this is him communicating with us. I know he must be scared and still wondering what is going on. I'm hoping today will show even more signs of "waking" up.
I have posted two more entries ('Back to Houston' and 'More on the First Week') to finally get the past few weeks up to date. I know I'm forgetting certain things and more importantly the moments of humor. Such as standing across the street watching his parents. We got split up and I was going to meet them. I looked across the street and saw his father wandering around at one end and his mother at the other end looking for him and me. I finally noticed her seeing his father, shaking her head, and running to catch up. When they got across the street to my side, still not knowing I was there, I was laughing. We make each other laugh.
His mother also got onto me about drifting off. Many, many times I would just be staring off into space. She asked what I was thinking of when I did that. There truly is nothing particular I'm thinking of, I just see Tyler's name in my head as I'm still trying to comprehend this situation. His father said he was taking offense at this since I tended to drift off when he is talking. I just said, "hmmmm, isn't that interesting", while laughing.
Nicole is closer to setting the date for the Denver Rock Bottom fund raiser. She has her plan together and I won't be able to thank her enough for this.
I continue to try and keep Tyler's affairs in order as best I can and to manage my Colorado and Houston lives. But today I need to start working again. Wish me luck.
Keep your fingers crossed and the thoughts and prayers going for today!
Robert
Today was a better day. Even though today marks 3 weeks from the initial heart attack.
This Hallmark movie continues on.
We met Nurse Carlton. He was very informative and let us know that they were once again trying to get Tyler off the sedatives (fentanyl, adavan, etc.). They were now using Seroquel to keep Tyler relaxed, but it isn't a sedative. In order for them to remove the tube running down his throat, Tyler has to regain consciousness, so that he can clear his throat and breath on his own. The longer the tube is in his throat, the greater chance of vocal chord paralysis. Again, didn't want to hear that but have to be prepared.
We were introduced to Janet and David who went through a very similar experience. They were dropped into Houston (they lived in Arkansas) and David had an LVAD placed also. He was unconscious for almost two months. They showed up Friday and I was shocked. There he was walking around with a little bag holding his controller and batteries. He can talk, but very quietly and has trouble forming some words. He had a lot more complications than Tyler, so if he can recover I know Tyler can.
Tyler has begun to have more facial movements (he looks pissed!), and moved his leg and arm a little bit. We continue to talk to him and I swear he can see and hear us. He is running a temperature but is also continuing to work his bladder. A great sign. He also has a pulse that you can feel. Not insignificant. We were told he wouldn't have a pulse because the LVAD is a "continuous flow" device, so in order to check his blood pressure the hospital would have to use a Doppler method. Having a pulse means the left side of his heart is still hanging in there. What we are hoping for now is that the implant will continue to support the healing of his heart and maybe the end-game will be that Tyler will be able to have the LVAD removed and not need a transplant. We have been told that this is a slim chance but I've decided I can hope and pray for this.
He also produced two tears (one from each eye), while his mother and I were talking to him. I also have to believe this is him communicating with us. I know he must be scared and still wondering what is going on. I'm hoping today will show even more signs of "waking" up.
I have posted two more entries ('Back to Houston' and 'More on the First Week') to finally get the past few weeks up to date. I know I'm forgetting certain things and more importantly the moments of humor. Such as standing across the street watching his parents. We got split up and I was going to meet them. I looked across the street and saw his father wandering around at one end and his mother at the other end looking for him and me. I finally noticed her seeing his father, shaking her head, and running to catch up. When they got across the street to my side, still not knowing I was there, I was laughing. We make each other laugh.
His mother also got onto me about drifting off. Many, many times I would just be staring off into space. She asked what I was thinking of when I did that. There truly is nothing particular I'm thinking of, I just see Tyler's name in my head as I'm still trying to comprehend this situation. His father said he was taking offense at this since I tended to drift off when he is talking. I just said, "hmmmm, isn't that interesting", while laughing.
Nicole is closer to setting the date for the Denver Rock Bottom fund raiser. She has her plan together and I won't be able to thank her enough for this.
I continue to try and keep Tyler's affairs in order as best I can and to manage my Colorado and Houston lives. But today I need to start working again. Wish me luck.
Keep your fingers crossed and the thoughts and prayers going for today!
Robert
More on the first week
I'm trying my best to write the events in the order they happened but am missing some things. Most important, his family arriving.
His family arrived on Wednesday, October 28th. I was able to get them up to see Tyler even though it was outside of visiting hours. His family and I quickly had to learn each other on a different level than we had known before. We all have Tyler's best interest at heart and were trying to work through all of the information we were being given. We finally had "the talk" to decide together what we thought the best decisions would be. We even signed and made copies of the decisions we had made so that as things happened further down the road we could refer back to when we were the most logical we could be during this. I went to confirm our understanding with one of the nurses and one of the doctors. The doctor said we were being extremely reasonable, even though there were never right or wrong decisions necessarily. (I like this particular doctor a lot. He has always kept me in the loop of things and been patient when asked the same question over and over. But, I haven't seen this level of CYA (cover your ass) ever before and I worked in a banking institution for 4 years.) The nurse explained that the family was "literally" on the same page and I showed him what we had signed together. His jaw truly dropped and he kept saying, "no one ever does this, no one ever does this!". He thought under the circumstances we were doing very well. We would be reminded of this 'signing of the paper' story a couple of times by the St. Luke's staff.
At one point during the first week I was there, I noticed his mother patting his arm. I mentioned that only a month or so ago, Tyler had hugged me and was patting my back. I asked Tyler what that was all about and he said "...that is how my mother did it". Of course I meant this in the best way and his mother started to cry. I looked up at the nurse at the foot of the bed and she was tearing up also. I asked Barbara, the nurse, if she was okay and if there was anything I could do for her in her time of need. This broke the sadness a bit.
During this time we were also trying to figure out how to legally deal with things since his family would need to get back home and I would be in Houston. Without a power of attorney from Tyler the only option was to petition the courts in Houston for guardianship. A very expensive and long process. I finally harassed enough people at St. Luke's to find out that any legal consents needed could be done by phone with his parents. His parents decided they would stay until I got back from Denver. They ended up staying for almost two weeks after I got back.
We started to meet a lot of the St. Luke's staff that would help guide us through this situation. Did I mention how surreal this still is? Besides the nurses and doctors, we met Stephanie (transplant social worker), and Mary (hospital chaplain).
Trenton and Temple found the Blood Bank at the hospital and gave blood before leaving. They also began discussions with Kelley about fundraisers. Bless them, because my head was beyond thinking about that stuff. The night after the meeting with Stephanie (in which she discussed all that we were facing), I looked at Kelley (she gracefully got a room at the Marriott for both of us) and began crying and saying I just wouldn't be able to handle all of this. She kept saying I would be able to handle it and I agreed, but I just need to release some of the fear. I was beginning to realize how long and hard the road was going to be for Tyler and I. I also started to understand that I wasn't going to make it back to the resort with Tyler after all.
Tyler's parents had met Mary, the hospital Chaplain. She prayed with them and she also introduced herself to me. Told me if I needed anything to let her know. I just kept saying that I would get in touch with her someday if I needed anything, blah, blah, blah. I didn't think I was going to need to talk to a Chaplain. My spirituality was intact. I'm logical. Thanks, but no thanks. That changed one morning during a melt down. I was standing next to Tyler's bed and just began to cry those heavy tears again. Tyler's mom came in and saw this. I noticed the look on her face and I kept saying ... "he's fine, he's fine, it is just me". His mom hugged me and cried a bit with me. At this point I grabbed Mary and took her to go talk. I talked to her for about an hour and it was a good counseling session. God/the Universe was sending me what I needed, when I needed it.
His family arrived on Wednesday, October 28th. I was able to get them up to see Tyler even though it was outside of visiting hours. His family and I quickly had to learn each other on a different level than we had known before. We all have Tyler's best interest at heart and were trying to work through all of the information we were being given. We finally had "the talk" to decide together what we thought the best decisions would be. We even signed and made copies of the decisions we had made so that as things happened further down the road we could refer back to when we were the most logical we could be during this. I went to confirm our understanding with one of the nurses and one of the doctors. The doctor said we were being extremely reasonable, even though there were never right or wrong decisions necessarily. (I like this particular doctor a lot. He has always kept me in the loop of things and been patient when asked the same question over and over. But, I haven't seen this level of CYA (cover your ass) ever before and I worked in a banking institution for 4 years.) The nurse explained that the family was "literally" on the same page and I showed him what we had signed together. His jaw truly dropped and he kept saying, "no one ever does this, no one ever does this!". He thought under the circumstances we were doing very well. We would be reminded of this 'signing of the paper' story a couple of times by the St. Luke's staff.
At one point during the first week I was there, I noticed his mother patting his arm. I mentioned that only a month or so ago, Tyler had hugged me and was patting my back. I asked Tyler what that was all about and he said "...that is how my mother did it". Of course I meant this in the best way and his mother started to cry. I looked up at the nurse at the foot of the bed and she was tearing up also. I asked Barbara, the nurse, if she was okay and if there was anything I could do for her in her time of need. This broke the sadness a bit.
During this time we were also trying to figure out how to legally deal with things since his family would need to get back home and I would be in Houston. Without a power of attorney from Tyler the only option was to petition the courts in Houston for guardianship. A very expensive and long process. I finally harassed enough people at St. Luke's to find out that any legal consents needed could be done by phone with his parents. His parents decided they would stay until I got back from Denver. They ended up staying for almost two weeks after I got back.
We started to meet a lot of the St. Luke's staff that would help guide us through this situation. Did I mention how surreal this still is? Besides the nurses and doctors, we met Stephanie (transplant social worker), and Mary (hospital chaplain).
Trenton and Temple found the Blood Bank at the hospital and gave blood before leaving. They also began discussions with Kelley about fundraisers. Bless them, because my head was beyond thinking about that stuff. The night after the meeting with Stephanie (in which she discussed all that we were facing), I looked at Kelley (she gracefully got a room at the Marriott for both of us) and began crying and saying I just wouldn't be able to handle all of this. She kept saying I would be able to handle it and I agreed, but I just need to release some of the fear. I was beginning to realize how long and hard the road was going to be for Tyler and I. I also started to understand that I wasn't going to make it back to the resort with Tyler after all.
Tyler's parents had met Mary, the hospital Chaplain. She prayed with them and she also introduced herself to me. Told me if I needed anything to let her know. I just kept saying that I would get in touch with her someday if I needed anything, blah, blah, blah. I didn't think I was going to need to talk to a Chaplain. My spirituality was intact. I'm logical. Thanks, but no thanks. That changed one morning during a melt down. I was standing next to Tyler's bed and just began to cry those heavy tears again. Tyler's mom came in and saw this. I noticed the look on her face and I kept saying ... "he's fine, he's fine, it is just me". His mom hugged me and cried a bit with me. At this point I grabbed Mary and took her to go talk. I talked to her for about an hour and it was a good counseling session. God/the Universe was sending me what I needed, when I needed it.
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