Monday, March 30
Faith's bili is up. When we got here, direct was 6.7 (up from 5.8 at her last labs in Denver) and total was 9.9 (up from 8.9 in Denver). This week, direct is 8.0, total is 11.8. This is actually a good thing. Dr. Puder said he gets nervous when the numbers don't go up. When you start Omegaven, the numbers first spike, and then start going down, usually really fast. Her AST/ALT have gone up to match, but should also go down as her bili's do. The exception, Dr. Puder says, is their other Omegaven baby in Denver, Max, whose AST/ALT have stayed elevated...
As I looked at the lab printout Dr. Puder gave me, I had a little freak-out minute when I saw a hand-written note at the end that says "has MRSA +". I was like, "WHAT?!" and thinking, when this kid does infection, she really goes all out with the ones that take the big guns to treat. Thankfully, her preliminary cultures (from her incision) came back positive, but the final result was negative.
In unrelated news, Church at Calvary Chapel last night was great. It was very small, but I guess when you're looking to make connections, small is good. I talked to the pastor and his wife, who also have a daughter named Faith, who had a very large brain tumor and was treated at Children's. She is better now, and just as our Faith has done for us, she was a great strenghtener of their faith and trust in God. They have a women's Bible study on Tuesday nights right next door to the hospital (which is only a couple of blocks from DNH) that I think I will check out, and I think I will continue to go to their Sunday night worship. You can never have too much worship...
3 years ago
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I saw your story on the DDC give back blog. We were the recipient of the first 5% give back day - our blog is here: http://colofisch.blogspot.com
It appears we were at Children's while you were there as well - from Oct 29 to Dec 6 - but in the PICU and floor 6, as opposed to the NICU. But I can identify and imagine what you have been through. It sounds like you are being the best advocate you can for Faith, and leaving no stone unturned for her. That's what we as parents do, me included. I'm doing the same for my Cici. I can't wait to see all the progress that both of our girls will make! I also had a friend whose son had neonatal hemochromatosis and was in the TCH NICU for 8 weeks, also with some experimental therapies. They paid off! A small world indeed. Keep going, you're doing great, and she looks great!
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