Transplant Evaluation!

We went to Gavin's transplant evaluation this week! We decided to drive since its only about 6 hours away, and we didn't want to have to rent a car while we were there. Gavin did great on the way there...he fell asleep almost immediately and didn't wake up until we were ready to stop and eat dinner. Gavin got to eat mooshed bananas for the first time! He loved them (despite what the pictures below show!). We ate and rested for about an hour and a half then hit the road, and Gavin again promptly fell asleep. He didn't wake up again until we were pulling up to our hotel in LA! Good boy! We arrived pretty late, around 12:30am, but since Gavin's first appointment wasn't until 2pm the next day, we knew we could sleep in.

Tuesday we slept in, showered and dressed and ate brunch at an awesome little french cafe near our hotel. (I have a feeling we'll be going back quite often during our 3 month stay!) I got the ham & swiss crepes with organic salad and Andre got some quiche lorraine with organic salad (everything in LA is organic), we split a chocolat croissant, and they brought sliced baguettes and butter to our table, too! It was sooooo good. The waiters were all french guys (ladies, feel free to swoon) and they had a bunch of french imported goodies for sale (I bought a cool magazine to browse through during Gavin's appt). As we were going to pay I noticed a stack of magazines on the counter right next to the register. On the cover was a black and white photo of the top half of a nude model with her arms stretched up over her head. Needless to say, it was a good morning for Andre. I think we both liked that cafe for different reasons. :)

After getting slightly lost for about 5 minutes (even with written directions AND the GPS) we made it to the UCLA medical building. We got to speak with Dr. McDiarmid first, who is the head of the transplant program there. We LOVED her!!! She was so great...very forthcoming and honest with her answers, and went over everything we didn't even think to ask about. (she is Australian and has the most awesome accent, too) She said Gavin will definitely need a transplant. To finally get an answer, one way or the other, was such a relief, which I guess is sort of strange because she told us our son would need a huge operation. But I guess the just not knowing was harder to deal with. She estimated it would be within the next 3 months, and for sure by the end of the year. I asked what could be the very earliest, and she said if the perfect liver fell out of the sky and somehow made its way down the list to Gavin, it could be the week after he's placed on the list!!! That was a little panicky to hear! I still haven't really switched from "I don't want the transplant soon, its too scary!" to "I can't wait until he gets his transplant!"

She also told us that liver transplant is one of the hardest transplant to do, even more than the heart, which was very surprising to us at first. She explained that with the heart, unless you have a congenital defect, every one's heart is shaped the same. The arteries are really big, there aren't very many, and they are easier to connect. Whereas with the liver, every one's is shaped slightly different, the ducts and veins that flow into it are small and there are a lot of them. She also told us that the biggest problem with liver transplants was not rejection, but actually with the ducts getting clogged, or ballooning up, or stricturing. Sometimes they can fix these things with smaller procedures, but sometimes they have to open up the patient again. 3% end up needing a second transplant within the first week.

She said Gavin will be placed on the list early next week, and that we need to have a plan in place by then. Overnight bags packed, by the door, plan for the older kids, etc...once we get the call, we have to drop everything and go straight to the airport, get the soonest flight to LA, and be at the hospital within 4-6 hours. There could also be a few "false alarms" where we get called out as a backup, in case the liver doesn't work for the child who's on the list before him. Gavin could be prepped, tubed, anesthisized and ready for transplant and then at the last minute, they might decide its not the right one for him. One family was called 4 times before their child actually got to go through with the transplant.

We talked about the feeding tube, and she said she doesn't have much success with those, and considering his condition and how close he is to transplant, she'd rather he just get an intravenous line. He will have to get one before transplant anyway, and she said it sometimes helps to have time to adjust to it before the medical problems start (since we will have to take care of it at home). Basically it is an IV that will be surgically placed into one of his veins in his chest, and we will hook up his "food" to that from an IV bag at night. It will go straight into his bloodstream and totally bypass his stomach and liver so we won't need to worry about him losing calories through spitting up, using energy to eat, pooping, etc. I am guessing we will do this next week sometime, since they want him to start gaining as much weight as possible before the operation. I'm kinda conflicted about it...I'm glad he won't have the tube, its a huge pain to deal with. But having Gavin put under and in surgery, and in the hospital again, even for just a day or two is stressful. At least he won't have a big tube taped across his cheek though!

We asked some more about live donors and she said we could do some pre-workup on Andre, but only if he ends up being an MZ carrier (more mild), not an SZ carrier (worse). So we're still waiting for our results on that. But she said that Andre would only be the back-up plan anyway, that they actually prefer to use a cadaver organ because they have more leeway of what they can take and work with. With a live donor, they can only take so much. Also, we all have two big ducts that run into the liver, and they are in different places on everyone...if one of his is connected on the smaller, left side of his liver (the part they would take) then its a complete no-go. I asked about other family members or friends who have mentioned they wanted to be tested to be a live donor, but she said that would only be a very last resort if Gavin was in critical condition and couldn't wait any longer. She wants us to come back in 4 weeks for another check-up, and we'll start Andre's work-up then, too.

Next we met AJ, the transplant coordinator, she was so great! Basically her job is to make everything run smoothly and that everyone involved is on the same page. She gave us a tour of the children's hospital, but we may not end up being there. They are building a new children's hospital across the street, and its *almost* done, supposed to open the end of June. So we may end up being there (crosses fingers) I hope we are, because it looks really nice! The old children's hospital shares two kids to a room, and the PICU doesn't even have rooms...just curtains around the beds, and you can't stay the night. (that is going to kill me!!!)

We also got to meet another family who goes to Gavin's same GI here in Mesa, who just happened to be there this weekend because their son got his liver transplant...3 weeks after being put on the list!!! They had just finished their first fundraiser, and 30 minutes later got "the call" but were told not to get their hopes as they were the back-up. They flew to LA, sat, waited, got prepped for surgery, waited, then all of sudden got notice that yep, their son was going to get it! Crazy...it really made me freak a little bit (a lot) inside because this is getting REAL...and FAST.

We had been at the hospital for almost 5 hours by then, so we ended there and went and got dinner at a sushi place by our hotel. The next morning we got up bright and early (read: miserably early!) so Gavin could get an ultrasound that morning at 9am. Traffic was so bad that we had to leave by 8am, and barely got there on time (it was a 10-15 minute drive the afternoon before). We may have to redo it though because we completely forgot Gavin was supposed to fast from 6am and fed him on the way to the hospital, and he was being really fussy and wouldn't hold still.

After that we got to talk with one of the surgeons for a few minutes, he basically went over the same stuff Dr. McDiarmid did. 90-95% of their patients survive the first year after transplant, 80-82% survive the first 5 years after. I must have shown my emotion at hearing the last numbers (80% is not good enough for me!!!) because the surgeon re-iterated that without the surgery, Gavin has 0%. I would feel a lot better if the numbers were 99.9% though.

Then we met our social worker, Judy, who will basically be our support person. She will make sure our financial, emotional, and daily living needs are met while we are there (she'll follow us around with food and water and make us eat & drink!) She gave us a bunch of information for housing options, so we'll be searching through those this week.

By then it was almost 2pm, so we wrapped things up and left from the hospital and started driving home. Our drive home was a bit more eventful...Andre had stopped to change Gavin's diaper, and he laid him on the front seat of the car, turned his back to grab a diaper, and Gavin pooped all down the side of the seat and car!!! And of course, we ran out of wipes right then. I was no help at all because I had been SO sick all morning (stress, nerves, something I ate?!..I don't know, but I felt like throwing up all day long and could barely move). So that was "fun" to deal with!

Then as we were heading into Phoenix we got pulled over by the State Highway Patrol because our tags were expired by ONE DAY. I am not even kidding. I wish I were. I had a few choice words for that policeman (which I muttered to myself after I rolled up the window), but once he found out where we had been and why, he felt pretty bad. We got a written warning, but he said "not to worry about it". Okay then, thanks for wasting an hour of our time. Our trip home ended up taking over 8 hours instead of 6!!!

But all in all, it was actually a nice trip...almost like a mini-vacation. I don't think reality has quite set in yet. I have had a few little freak outs, but nothing really big. Its almost like my mind can't even comprehend something so scary, so I am just blocking it out. Right now its like we're just planning for a long trip. I'm not sure that feeling is going to change until we get "the call", but that's okay with me. Until then I'll just keep busy with preparations and fundraisers and his blog. I added links to make donations finally...it is hooked up to his benefit bank account. And I am hopefully going to have at least one fundraiser going this week, a neighborhood yard sale, so keep your eyes open for more information this weekend!