Well yesterday was no different from the others as it contained many ups and downs. Good thing neither one of us get motion sickness. ;-)
We began our day in nuclear medicine where we were supposed to be getting William's dobutamine stress test....I found it a little odd that we were in nuclear med but my brain was already on overload. Turns out they accidentally scheduled him for a dobutamine thallium stress test instead of the dobutamine echo. We spent an hour there trying to get this sorted out until they said we will just have to schedule it another day. We are hopeful they can do it before we leave if not we will have to make another trip back up here soon. Oh well not too bad for all the tests William has had to have a few minor hiccups. I'm thankful that they didn't do the wrong test and then still have to do the correct one.
Once we figured out that we weren't going to be able to do that test we headed over to the cath lab for William's cardiac catheterization. They were actually very quick at getting him processed and worked in considering we were about three hours early. They took William back got an IV started and then let me come back. Three different cardiologists came in and explained the procedure. Then his nurse that would be in the OR with him explained it again. Haha I think we could have explained it to any other patients the rest of the day. After this we waited and waited for them to take him back, I think we got bumped once by an emergent case. This was not an overly painful wait for me as I was allowed to eat that morning but for William who had not eaten in almost 11 hours this wait was becoming unbearable. Thankfully about the time his stomach would have started eating itself they finally took him back for the test. During this time I was sent to fetch an orange soda and a snickers at William's request. It's funny the things we crave when we can't have anything.
After retrieving the food I sat in the waiting room for about 20 minutes and the doctor came out and told me everything looked great and that there would be no problems from his heart during transplant. Yay! (Actually I sneaked a peak at his numbers and they were great.) I waited in the waiting room another 20 minutes or so before they let me back in to see him. Once back there he had to lay flat another 30 minutes before he could sit up and eat. Finally just after noon they let him sit up and he ate a ham sandwich, grapes, a bag of chips and the snickers and drank his orange soda. Hungry boy!!
After eating we had another hour and a half before he would be able to stand up. All of the waiting was to make sure that his groin area wasn't going to bleed after the procedure. Finally at 1:35 they let him stand up and I walked him to the bathroom. We stood in there a few seconds and then he started to "go" he chuckled and said "Yay, it still works!!" I laughed so hard they probably thought we were doing something naughty in there. After his successful walk we were finally ready to go. He got dressed and loaded into the wheelchair. We had 15 minutes to make the half mile jog back to the Center for Advanced Medicine. We made it with 5 minutes to spare.
This next appointment was where we would get our decision from the lung team. This whole part of the day was very surreal.....They walked us back in the room and told us that all the tests showed that he definitely needed a lung transplant and that he would probably not survive without the liver transplant too. (Drum roll please.....) They said YES!!!! So, pending the liver team's answer next week, we are a go!! (The liver team said unofficially that if the lung team was willing then the liver should be a piece of cake.) It was such a short appointment but it said so much. All our hard work and all the tests William had to endure finally paid off. I didn't know what to say or do. I was in shock, William was exhausted. He took a nap, I went for a run through Forest Park. Both of us trying desperately to process what this means for our lives....This is the beginning of our new lives and we are excited and terrified at the same time.
So today we pack up and wait to see if they can fit him in to do this last test then we wait till next week to get our official answer from the liver team. More waiting but this time we are very hopeful and going to be thrilled to be home and see our beautiful baby girl. Jordyn, mommy and daddy are almost home and we can't wait to see you!! No lesson today just elated and anxious to start this new part of our journey!!! We are so thankful to have all of you pulling for us, your support is amazing!