Wednesday, November 9, 2011

Hippos and Roller Coaster Rides

   Wow talk about a busy couple of days!! Not to mention an extreme roller coaster ride.  (And the hippo we will get to shortly)  Yesterday was our busiest and longest day.  Today was not as bad but seemed to drag on forever due to very long wait times.

   Yesterday started out back in radiology, for the lung scan(see previous post for description). I swear it's going to be hard to sleep with the green lantern sleeping next to me.  Then from there we headed to get William's pulmonary function tests done.  This is where the roller coaster ride begun.  They weighed William for the first time in several weeks, and his weight is down to 120lbs, I guess we knew this was coming following the month we had but it's shocking to see the numbers.  We will put the weight back on I just wish I could do the eating or at least donate some of mine to him.  Next he had more blood drawn to see how his lungs were working(ABG), these tests were an improvement from the last time he had that lab done.  This was the beginning of the uphill part of our roller coaster ride.  From there he did his lung functions and these numbers were great, better than they have been in a year. Up to 26% from 20%!!! Yay!!!

   Next we headed to the liver transplant class. It was very informal and group style.  They explained the process for what would happen when they found a suitable liver, this process is very different when receiving lungs as well though.  From the liver transplant class we took our first of many half mile(no exaggeration here) jogs over to the old hospital and met with the anesthesia doctor.  He was very nice and encouraging and he was the first one that seemed excited about the idea of William being their FIRST liver/lung transplant! Next another half mile jog back to the Center for Advanced Medicine (CAM). My legs are gonna be in great shape after pushing a wheelchair for countless miles through the hospital. To give you an idea of the size of the hospital I took a picture of a scale model of the campus.

   Once back in the CAM building we met the pulmonoligist(lung doctor), he was nice and more importantly on time, this was shocking to us. He told us that all the tests so far were ok and no disqualifiers had been identified.  This is great news as we have completed a large majority of the tests needed for the lung team. He also seemed very interested in the idea of doing the first adult liver/lung transplant. He of course explained all the risks involved with the surgery and possible rejection issues after transplant. Even though we know all the risks it's still tough to hear some of the statistics, I won't bore you with the  numbers if your interested you can check it out on the net.  To us they are just numbers. Numbers we plan on defying of course!

   Next we met with the dietician, oh boy are we ever their worst nightmare.  William's diet has to be sodium restricted and low protein because of the liver, and yet has to be high calorie and high fat because of the malabsorbtion from the CF. Oh and he's diabetic so he has to watch his sugar intake.  I think his options are high fat air and cardboard with no salt.  Mostly she was impressed at our knowledge of the disease processes and that we manage despite these challenges.  From here you can probably imagine we went straight to the hospital cafeteria, a half mile away, and destroyed everything she just said....haha. Hospitals do not have great food to begin with, add diet restrictions and we had fun to say the least. 

   Our last appointment yesterday was with the psychiatrist.  This was also very informal and was pretty much just an assessment of William's understanding of the risks of the surgery and to make sure we have adequate support system(we told him how awesome all of you are).  Then we took our last long walk back across the campus back to the hotel.  On the way back we had a little fun.  Let's just say William was sick of the "big boy" wheelchair and wanted to try out the one from the children's hospital.....
(Told you there would be hippos  ;-) After our long day we had dinner and got some much needed sleep. )

  Today was not as busy nor did we cover as much distance but it seemed to last for an eternity because of the time we spent in waiting rooms.  William, knowing we didn't have as far to go today, decided to show why he is my courageous husband and walked all day!! (Although I really think it might have been his silent protest to me refusing to pull him around in the hippo) First we went to the liver doctors office, our appointment was at 9 needless to say around 10:15 we finally got called back for our 17 minute appointment.  This is actually more what we are used to in other facilities, but they had spoiled us the rest of the week so we weren't expecting the wait.  He was very positive and said that his numbers were great and his MELD score (number determining how badly he needs a new liver) was relatively low and if it wasn't for the need to do both at the same time that his liver probably didn't need to be transplanted yet.  He was informative but quick.  If it had not been for the wait this would have been a great visit.  Just another up and down of our roller coaster ride.

  Next we met with the financial planner and she was glad to know that we had already connected with the Children's Organ Transplant Association (COTA).  She explained our insurance benefits and talked about how much his post transplant drugs would cost us out of pocket.  While some of these numbers were huge we are prepared, with your help to raise some serious funds, to help us kick CF's booty and enjoy William's new life.  I'm sure there will be more opportunities to explain the financial aspect so I won't dive into it now.

  Our next appointment was back to the liver office, however, this time there was no wait.  We were taken right back and met two of the liver transplant surgeons.  I was surprised that one of them was a beautiful blonde bombshell with an awesome accent(and fabulous boots).  They were the most excited and talked like this was already a done deal!! They also confirmed that no disqualifiers had been seen and that pending his two heart tests tomorrow that they were ready to proceed.  His liver transplant coordinator gave me a big hug and a huge emotional lift.  This was probably my high for the day and the first time I felt like this was really gonna happen....fingers crossed!

  Last appointment for the day was his abdominal MRI and if you've ever had an MRI you know this was a long process.  I spent an hour and a half in the waiting room chatting with a friend I haven't talked to in 17 years. (Thanks Katrina it was awesome getting to catch up with you).  William said the test wasn't too bad except he got really hot at one point until the tech realized she had not turned the fan on....ooops!

  So now we just have the two tests left to make sure his heart is in tip top shape and that it won't cause any problems during or after the transplant.  I feel from the feedback we got today that if everything goes ok then we are ready to proceed with listing him. However we won't have any final answers until middle of next week.  AHHHHH more waiting!!! Today 's lesson: If it's worth it, then it's worth the wait!

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