The first day was a long one as we had four appointments and afterwards we had to get our hotel room all ready for Sofia. That night we went to a nearby restaurant for dinner and Sofia was a good girl throughout. She was pretty good at night as well, although it wasn't that restful for Mommy and Daddy as she beeped a few times.
Day 2 we brought Sofia in for surgery. They had us in pre-op where there are no toys for 2 hours then we finally were able to bring her back to the toy room so she could stay happy. They were in total about 3 hours late!
Afterwards we spoke to the surgeon and he said that things were better than he had been led to believe by the folks at Yale. Sofia is now at grade 2 stenosis and he thought a longer, lower set of rib grafts would succeed. He's seen A LOT of patients in similar circumstances so we were glad to hear this. Also GI did not see any sign of reflux damage which was good.
However they did do an impedance (pH) probe on Sofia for twenty hours and that was really tough on her as she was recovering from anesthesia and did not want to be messed with. Mommy spent the night with Sofia and Daddy stayed at the Ronald McDonald House and was able to see some friends in Philly.
The next day we picked her up. It took some time to discharge her but we were finally able to hit the road around 1pm.
Now we need to wait on the GI testing results but barring that the key really is to make a decision on where we want to attempt her second reconstruction. CHOP definitely has more experience and the surgeon seemed very clear on what he wanted to do, but of course logistically it is a nightmare.
Subscribe to:
Post Comments (Atom)
2 comments:
Extract from what I have read from this Blog, I would say that this trip to stay overnight in CHOP for 2 days is very useful and constructive.
The surgeon who examined Sofia has seen a lot of patients just like Sofia and spell out his diagnosis in such a short time but also in such decisive way that he is very clear what to do next for Sofia. Plus, CHOP
has more experience than CHOY(Yale).
I want to commend both Ted and Christine to make this facts-searching trip for Sofia is very constructive and useful for Sofia.
GrandPa YANG
Sofia is so brave and beautiful, and she continues to inspire me. GrandPa is right--Hurray for Christie and Ted!
Post a Comment