Yesterday we went to Phoenix Children's Hospital (PCH) and after getting a tour of the cardiac ICU, we met with the coordinator of the transplant team as well as several other people. The CICU was actually pretty great. They have 24 private rooms and each one has sleeper benches and/or chairs, private bathrooms, and they have laundry facilities for families to use. Also outside the CICU is a small kitchen and the hospital staff encourage families to bring food from home and keep it there in the event they get tired of hospital food.
Two floors below is a really great outdoor space, their rooftop garden, where you can have lunch or just hang out outside.
|PCH's Rooftop Garden|
Everyone seemed really nice and the hospital itself has a lot of natural light instead of feeling really industrial. If we have to spend a ridiculous amount of time in a hospital, I think this is about as nice as we could get.
|Plus the exterior lights at night are awesome.|
During our meeting, we met with our transplant team coordinator, the social worker, and the two surgeons who will be working on Max. We discussed our options with Max's treatment and while babies with HLHS would typically undergo the three stage surgeries, both surgeons agreed with our cardiologist's assessment that the best course of action would be a heart transplant due to his valve regurgitation. They told us that they have meetings every Thursday with a total of about 30 doctors to discuss the cases they have and they discussed us and they think a transplant would give Max the best chance for survival. We then learned aaaaaaaaaall about heart transplants, the process, and their after care. It was a LOT of information. We have a huge stack of literature that they sent us home with us as well as a full deck of business cards with all of their phone numbers. It was mostly just an overwhelming day in terms of information but we agreed that we'd rather know all the information up front to give ourselves time to process all of it.
We're also pretty happy with both of the surgeons. While we have a current plan for what we're going to do, they are both adaptable to potentially change how we treat Max based on any data or condition changes. Which is pretty nice, to work with people that aren't super rigid and are willing to be flexible when working with a non-textbook situation.