Wednesday, July 8
Wow, it's been a long time since I've posted an update! Don't worry though, no news is good news! Faith is doing great. We are in Boston until Friday morning for her first follow-up appointment since going home. She is having surgery in the morning to fix her scar (and give her a belly button), it's minor enough that she can have the surgery in the morning and her clinic appointment at 1:00.
Then tomorrow night should be fun, it will be almost like an unofficial Omegaven reunion because a bunch of families are planning on getting together. It's so nice to get together with other people who've been through similar stuff.
I haven't updated because not much has happened. In the past month and a half, we've been to Children's in Denver 4 or 5 times for various appointments and the NICU reunion. We've been to our family doc once for Faith and once for me, for a check-up for Faith and to order about 10 different blood tests for me to figure out what's going on and hopefully come up with some kind of definitive diagnosis that can lead to treatment.
Faith rolled over for the first time on June 5, from her stomach to her back. She hasn't really done it again since, although I know she can... she doesn't like being on her stomach so I don't think she has much desire to roll over! She also got her second tooth, so now she has two cute little teeth on the bottom. She continues to grow like a weed and charm the socks off of everyone who meets her.
Faith got up to 27 mL/hr on feeds a couple of weeks ago, then backed down to 24 mL/hr because she was having diarrhea. The hope is that we'll get her on the Cisapride soon and be able to push feeds a little more aggressively to get off the TPN, but the concern with excessive pooping associated with higher fees is that she's not really absorbing the higher volumes, so even if she takes more in, she won't grow because she won't be getting what she needs from it.
Then last week, I found out she was being overdosed on her Ursodiol! Apparently there was some kind of mistake when the prescription was transferred from the pharmacy in Boston... her real dosage is supposed to be 30 mg/mL, and the dosage the pharmacy at home made her was 300 mg/mL!! Luckily it's a medication that doesn't have any serious side effects in high doses. The only negative side effect is... you guessed it, diarrhea!!
So, in the last week we have made it from 24 mL/hr back up to 27 mL/hr, with high hopes of continuing to increase feeds faster than we have in the past. (We've always only gone up by about 1 mL/week, but since she's tolerated going up by 3 in the last week I think I will try to go up by at least 2-3/week from now on.)
I am hoping to find out more about where we stand with Cisapride tomorrow at clinic, although I'm sort of hopeful that maybe she won't need it after all...
There has been talk between me and some of the other Omegaven families about trying to start a charity to help families whose insurance won't pay for them to go to Boston. Once they are here, the Omegaven is covered by a grant, and housing is available for free, it's just travel and the hospital bill that keep people from coming, and that really sucks. If anyone who reads this wants to help get a charity established or raise funds, let me know!
I'll try to be more regular in posting updates, although really nothing exciting has happened, so I don't have much to post about! That is a change I am perfectly happy with, though, and something I hope doesn't change anytime soon.
3 weeks ago