We went for our first visit to the center 3 hours from home. The appointment was scheduled for Thursday, and we were leaving for the beach Friday, so I drove Wednesday evening through the worst rainstorm I can ever remember driving through to stay with my sister-in-law, planning to have hubby and the rest of the family meet us on Friday.
Babygirl and I caught the train from there on Thursday morning. It took longer than I remembered - nearly an hour! But I have to say that everyone we ran into - train employees, strangers, and hospital employees on the same train (including one who all but took us by the hand and showed us where to go out of the train station, leading us through an underground shortcut the employees take to work!) - was exceptionally polite and helpful to us. I guess when you look confused with a cute kid and are looking for a large tertiary kid's hospital, people look at the kid, thinking heaven knows what about what might be wrong with her, and are especially kind.
The transplant team was wonderful, and I like the nephrologist very much. He was quick, noticed a few things about my little one that the other doc didn't comment on but that I had considered ("Why is she so TALL? Most people from her country are very small, and most kids with renal failure are even smaller!). He's requesting her growth records from the family doc, and may end up asking for an endocrine consultation.
The hospital itself is awesome. Each kids' room has some gaming system, an in-house TV network and cable. Each floor has an employee whose job is to entertain kids (DANG.). Each room (including ICU!) has parent sleeping arrangements for one parent, and the hospital has sleep rooms (double bed, lamp, alarm clock, phone) for parents as well.
I have no idea what the local people offer. It didn't occur to me to ask, and they didn't volunteer any information, although after what I saw and heard at the distant hospital, I couldn't help but wonder why not? After all, if this place deals with kids, don't they have a plan? And they do deal with a lot of kids. The have pediatric neurology, GI, surgery, pulmonology, and more.
So. She is listed at the new center also. At least, provisionally - marking time but not on the national list at that location until I can get them a copy of her dental records (also wanted by the local people) and most recent eye exam (not requested by the local folks).
And this is where we REALLY want to go.
DeeDee
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