Tuesday, August 6, 2013

Not much to report

Today we had a family meeting at 11:00. For the first time here we planned to be early, but we had a few road blocks. The parking garage at the hospital was full, so we had to park at The Wood Center around the corner. It should have been easy to find, but construction made it extremely difficult for us. We had to circle the hospital twice before we finally found it, and there was a long line of people waiting to get in. The meeting today was intended to inform us about kidney transplant in general and how the process works at CHOP. A lot of it was repetitive, but we were impressed with how the meeting was handled. We love the way the team here collaborates together and communicates with us.

After that we met with the nutritionist and transplant pharmacist. The nutritionist didn't tell us anything new. The meeting with her was pretty much an introduction and the same questions we have been answering since we got here. The pharmacist gave us an example of the med list a child of Parker's age would take post transplant, and the list of side effects. We like the fact that we have a transplant pharmacist here. They don't have that in New Orleans, but I think they would benefit from adding one to their team. It puts me at ease knowing that there is one specific person in charge of his medicines and changes made to it. 

We asked about a timeline of when they expect transplant to happen, but didn't get a straight forward answer. They pretty much said anywhere from 6 weeks to 3 months from now. They expect us to be up here at least 6 weeks after transplant, but we will have to come back every three months for a while. 

Tomorrow is the big meeting with the liver team. This appointment will determine whether or not he needs a liver transplant. The nephrologists and hepatologists hope to meet as a team tomorrow afternoon to give us an answer, but we may not know until the end of the week. I will let y'all know as soon as we do. 

Trying to get him to go to sleep last night.

Someone was up early! 

Front of the hospital

Waiting patiently..

Dinner..The pizza was so huge that between the two of us we could only finish three slices!

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