Pictures

A few pictures as I try to get the rest online. I now have a link above to see the pictures from Houston, or you can click here: Pictures

Tyler ready for one of our "pre-release" outings while at St. Luke's.

Tyler and Keith (another LVAD patient) in Tyler's hospital room.

Robert changing Tyler's dressing.

Tyler's scars and cord.

Janet and David (David has an LVAD also). Our neighbors and friends and most importantly, mentors, in Houston. They lived in the same apartment complex. Tyler is in the background doing what Tyler does best....talking.

Colorado - UCH

Tyler and I had our first full appointment with the University of Colorado Hospital staff. We met with the medical doctor, nurse, circ support, and the heart transplant coordinator. Tyler had a 40 minute echo-cardiogram and the LVAD rpms were adjusted a little higher, to 9600, which should give him a little more energy. As if he needed more! Very hard to get him to rest, but as he says .."I have things to do".
The UCH staff was very friendly and jovial. The interaction between them seemed very collegiate. The "appointment" only took four hours. We were very tired afterward and experienced a little of that "information overload" feeling again.

Tyler's blood work came back very good. All the levels are where they want him to be and his anemic level is getting better. After looking over the current medications, we were able to remove the Dipyridamole. UCH sent in the form to our utility company so that if the power goes out we are on the priority list. UCH is also contacting the Wheat Ridge paramedics to inform them of our situation and the LVAD.

We still have to go through a transplant evaluation before he is listed active again on the heart transplant list in the Denver region. That evaluation is now set for February 4th. We found out that there are currently 10 people active on the heart transplant list in the Denver region.

One of Tyler's "things to do" is going through the medical bills, which is becoming the most confusing aspect of this whole event. One bill came with just a line that said "Balance Forward" and no explanation of the charge. When Tyler called about the charge, the comment he got was: "Well, it is complicated." Well, if you want to get paid, uncomplicated it! It will take some more months to sort out what is actually owed and how much insurance is actually going to pay, so in the meantime the bills wll just have to be filed.

I had my oncology scans and am still cancer free. They did find a kidney stone and I'm going to have that checked out today. I guess I'm just trying to see if I can have as much pain as Tyler. It will make for a very loud household!

Robert

JOY! JOY! JOY!

As you all know, from this wonderful blog that Robert has created, that we are now home. I just want everyone to know, once again, how thankful I am for all of the love and support you have shown both of us during this time. I am working on contacting everyone personally.

I have been out and trying to get my strength back.

We will continue to need your prays and support as we get ready for my heart transplant. Thankfully it will be taking place here in Colorado. We are hopeful that we will be put back on the active list at the end of this month.

Again, thank you and we love you all!

Tyler

Good to be home

Tyler and I made it home on Tuesday the 12th around 4pm. We made the trip in two days and stopped for the night on Monday in Blackwell, OK. When we left Blackwell it was about 20 degrees and heavy fog. The fog lasted for a couple of hours on our drive and started to dissipate once we were on I-70 headed west. The closer we got to Colorado the sunnier and warmer it became. As we crossed the state line into Colorado it was 64 degrees and sunny. I'm counting this as a cosmic sign that we were supposed to be going home.

We are adjusting to being home and starting a new routine. Still unpacking and sorting through the mail that has piled up. I had an electrician install a grounded outlet in the bedroom for the power module and he also put it on a dedicated circuit. The placement is perfect and allows Tyler to reach all the rooms upstairs. The "kids" were very glad to see us and of course Toby was very happy to see Tyler again. DJ stayed at the house the first night and most of Wednesday to help out. He truly has been wonderful and I still can't believe he was able to move into the house during Act I and Act II of Tyler's Heart! Unfortunately for DJ there is some separation anxiety between him and Toby.

We met with one of the VAD Coordinators (Kathe) at University of Colorado Hospital (UCH) on Friday while having blood work done. UCH is located in Aurora which is on the east side of Denver, in a very new medical center/campus, and about 20 minutes away from our house. On January 25th we will meet with the doctors, VAD coordinators, and the transplant social workers. Tyler's results came back and his INR level is 1.5, white blood cell count good, and a bit anemic (but still in a good range).

Friends have started coming by to "lay hands" on Tyler, bring meals, and to start getting trained on the LVAD equipment so that they can take Tyler around town without me. We also were treated to hair cuts by Orlando which was very appreciated! I was able to get my blood work and X-ray done Thursday and have a CT scan on Monday followed by my oncology appointment next Wednesday.

So things are slowly getting to a "new normal" and now Act III starts - waiting for a heart.

Robert

Running Away

Wednesday was a long day. About 9:00am we parked at the O'Quinn tower building where Tyler has his cardio rehab and then walked over to St. Luke's to put in a request to get a copy of Tyler's medical records. As we were walking back to the O'Quinn tower we ran into a couple of Tyler's doctors who were very impressed at how well Tyler was doing and again mentioned the August conference that they are hoping Tyler can attend. Then Tyler went to his physical therapy appointment. They asked Tyler to do his "warm-up" exercises and we explained that we had just done that by walking back and forth from this building to the hospital and back. They couldn't believe we had already done that much walking and Tyler once again mentioned how mean his "at-home" nurse was to him. After his therapy appointment and meeting with a nutritionist, Julia (nurse from CV ICU) picked us up to go have lunch with her and her partner. We had a great lunch with them and then went back to the hospital to pick up the medical records. It was now about 1:45 pm. Walking through the lobby I noticed Tyler was slowing down a bit and remembered we needed to get back to the apartment soon for his afternoon meds. I asked if he would be okay if I got him a wheel chair. It took about a split second for him to agree. We got the medical records and wheeled over to the Q'Quinn building again and got home. Tyler promptly took his meds and a nap.

Thursday the LVAD clinic called to cancel our Friday appointment due to weather. We didn't understand this at all since it would have been only our second clinic visit and the weather was just cold. The explanation was that they were still having clinic but were worried about people coming from far away. I think they looked at the records and thought we were traveling from Colorado. We pretty much demanded that we keep our appointment.

Friday we went to our appointment with Janet and David, who gave us a lift to the hospital. As we were waiting for Dr. Kar, we were preparing for a "medical records" fight. We were under the impression that information was not being exchanged with Colorado and we were still determined to leave by January 23rd. The doctor came in and commented on how well Tyler was progressing. Still had low INR levels but it was expected and they were going to adjust the Coumadin again. He asked how Tyler's parents were doing and told Tyler to be nice to me. Then he mentioned that he understood we were both "chomping at the bit" to get home. He told us that he had been in touch with the doctor in Colorado and since things looked good we were released to go home. What?! Tyler told Dr. Kar that he wanted to respect the weekly appointments for the first four weeks. Dr. Kar said that wasn't necessary and we could go ahead and go. I'm hoping my mouth wasn't open for to long and mentally I was already on the interstate headed home.

We discussed leaving with Janet and David. Tyler seemed to me to be hesitating and he was thinking about staying for one more clinic visit. He especially wanted to get in some more physical therapy. Janet and David mentioned that we might not want to take the chance of waiting and running into bad weather. Based on my reaction Tyler switched gears and figured we might as well leave the next day. I finally thought things through and had to many things to "deconstruct" in order to leave Houston...closing up our "winter" home and my company's "Houston office". I still can't believe I had to put in a forwarding order for our Houston address. We have decided to leave Monday morning, January 11th. We will take at least two days to drive back and have identified the heart centers along the way in Dallas, Oklahoma City, and Wichita. And yes, I promise not to drive like I'm in the movie Cannonball Run. Well, for the most part.

I think I'm still in shock that we can go home. Could this particular chapter really be coming to a close? Are we seriously going home after almost 10 weeks? Will we have separation anxiety? How fast can we run away? Tyler even started packing after we got home.

We have met some really great people in Houston that we will indeed miss. Houston may be the fourth largest city in the U.S., have some really crappy roads, and freaky when it comes to cold weather, but Houston also has some of the nicest people we've met. Very caring and supportive. From St. Lukes staff (nurses, doctors, social workers, admin staff, coordinators, rehab staff), other patients (especially Janet and David), the Wells Fargo banker, and neighbors at the apartments. The Houston community really has some wonderful people that helped us out tremendously. Hopefully we can visit them in August if the conference presentation of Tyler's case happens.

But right now.....RUN AWAY....RUN AWAY!

Robert

Progressing towards January 23rd

Yea, I said (wrote) it! January 23rd. We have decided we are driving back to Denver on January 23rd. Granted, we set this date on our own, but we have to leave Houston sometime. As great as St. Luke's and Houston has been to us, it is still about time for us to leave. We are both getting extremely homesick.

It has now been two weeks out of the hospital and things are going well medically. Tyler keeps making progress and building his strength back. It has also been about 8 weeks from the open heart surgery and his chest seems to be healing well.

Tyler had his first LVAD clinic appointment that took about three hours. While waiting on the nurses and doctors to start rounds, the clinic took on a social atmosphere as patients started visiting each others exam rooms. It confused the staff since they would show up to an empty exam room and have to find the patients in the next room. The socializing was great and the medical parts went smoothly. The doctor adjusted Tyler's Coumadin to a higher level since we are determined to eat vegetables. I know, I know....those Colorado hippies and their vegetables. As long as we have a consistent diet the doctor said they could adjust to it.

After the clinic appointment, we went to register Tyler with the Cardio Rehab department so that Tyler has a supervised cardio therapy regimen. Of course we ran into some bureaucracy with that process but just enough to remind us that we are still in a medial system. His first workout was Tuesday and he did very well. We have gone to the apartment's fitness center a couple of times to do some light work outs and have taken a couple of walks. Tyler is able to walk faster and he is no longer using the walker. We got him a cane to use instead and he is now even getting to the point of not having to use that. He is now able to take standing showers without assistance and can stand in the kitchen to prepare meals. Good news for me! A few nights ago he experienced a lot of leg pain but the next morning was able to move his toes in his right foot, so it looks like more healing is taking place. Tyler still gets worn out but his stamina is increasing. His weight is still basically the same as when he left the hospital but we were told that is normal for the first couple of weeks.

We had an appointment with the pain management doctor and the Fentanyl dosage was reduced again. Tyler is trying to reduce the amount of Vicadin he takes everyday and has now taken over keeping track of his daily meds and logging his LVAD stats everyday.

We are still filing documents with the insurance companies to try and get back the money that was spent in Mexico and working on transferring care to Colorado. The University of Colorado Hospital is waiting for more medical records from St. Luke's so that they are ready for us when we get back. For some reason there appears to be hesitation by St. Luke's to send the information and we aren't sure why. I'm hoping we can keep this process moving along since, as I mentioned before, we have set a date to go home. I think 12 weeks is long enough for a vacation.

Robert