At home, a minor Festivus miracle- Ellie's line worked perfectly when we too her off of her PN this morning. We were all set for a day at Children's with our bag packed for a possible extended stay but the saline flush went in, the blood came out, and we are in business. The TPA took a little bit longer than usual to work but it looks like we are good for now.
At Children's, a more significant Festivus miracle. There is a little boy that we know who got on Omegaven much later than Ellie has had the serious issues with his liver that come with the old lipid source (See August 26). The Omegaven just didn't do its miracles with him. His bilirubin is through the roof, his other organs aren't doing well and he is just plain old sick.
Yesterday they listed him in the organ donation program at Children's and just fours hours later, organs were available for his very rare blood type. A very special Festivus gift and we are hopeful that his surgery goes well this afternoon. And evening. And tomorrow morning (it takes more than 16 hours to do the transplant).
It is very tough for Abby and I to see what could have been. If we hadn't stumbled into Children's and met Dr. Puder and Kathy Gura who do the work on Omegaven. We would be in a much different situation right now and making that same decision about a transplant. Instead, because of nothing that we did other than coming to Boston, our girl is upstairs asleep in her crib doing what babies are supposed to do.
Hopefully that will be the case for our friends soon.
1 comment:
Dear Gib, Abby, and Ellie,
Just catching up with all the happenings after a busy end of the semester: what terrific news, pictures, etc. etc. It makes for a very merry christmas.
I will be in Freeport for some of next week - will check in with Jack and Martha and whoever is around there. Depending on their reports, I may try to swing by Wellesley going one way or the other. But in any case, you're in my heart and happiest thoughts.
Love,
Barbara
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