Tuesday, March 3
This is just going to be a quick post, as I realized I haven't updated in awhile... We are in the middle of a difficult decision right now that will most likely result in Faith being transferred to another hospital out of state. Right now we are leaning towards Boston, for a number of reasons (Omegaven, their CAIR program, the great doctors). The doctors here aren't necessarily supportive of that plan... we have to wait a couple of days for our insurance to kick in and then I'll be in contact with them (and have our case manager talking to them, too) to see what they'll cover if we have Faith transferred to Boston for intestinal rehabilitation. We won't mention Omegaven, it will just be a happy extra if we go to Boston, but for all insurance purposes, we will be going there for intestinal rehabilitation.
Either way, we will likely be going somewhere with an intestinal rehabilitation program, although Dr. Soden feels it is much more important to go to Pittsburgh and get listed for a transplant, and that we'd get a second opinion and a rehab evaluation while we are there... but I've heard a couple of things now that make Pittsburgh not sound like the best plan... I've found a great deal of support and information from speaking with other short-gut families. Even though Faith has almost all of her intestine, that's essentially what they're classifying her as for now. They say she has "functional" short-gut.
I spent most of last week reading all about Max Munakata, a short-gut baby from Boulder who is also under the care of Dr. Soden and Dr. Partrick. He is an Omegaven success story, and I hope that we'll be able to get together with his family soon to talk about everything and learn all we can from them.
Faith will be 50% to full feeds tonight, if she continues tolerating them. We recently re-started Erythromycin, since we can give it to her intestine, and not her stomach, so it isn't making her vomit like it was before. But her reflux has gotten progressively worse as we've gone up on feeds. Still, her poops have also gotten bigger and more frequent, so maybe things are working better than anyone gives her credit for... Maybe she'll make us go through all of this trying to get things figured out to transfer to a different hospital, and then get better and not have to go. We're not holding our breath though...
3 years ago
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3 comments:
I am so sorry to hear that Faith is facing such difficulty. If it is any comfort, Emma spit up/threw up a lot for the first few months. Like Faith, she continued to poop and gain weight.
While we were in the hospital the doctors insisted that we report if she had any spit up with her feeds. If she did, they were going to give her a broviac line, stop feeds, and return to TPN. There was no way that we were going to let that happen. So we kept the spit up to ourselves as we were the ones providing all of her care once she was placed in a lower level of care in the hospital.
We took her home before we would have been able to if we had let them intervene. I realize that Faith has had a more difficult road than Emma, but there are some strong similarities and I just wanted to share this with you in the hopes that it might be helpful. Is it possible that all of their intervention, TPN, etc. are actually slowing Faith's recovery?
Faith is in our prayers.
Sincerely,
Ashley
Thanks so much for continuing to think of us and pray for us, and for suggesting another possibility.
I have wondered that many times along the way, if they're keeping her from progressing with their interventions... but the thing that answered the question for me was last week when we tried to give her that little bottle (just 5 mL's) and she threw up 5x as much as she took in within about 1/2 hour of taking it. :( The other thing was when she was off the TPN for those 5 days or so when we were supposed to go home, and every single day she lost weight, even though she really wasn't throwing up as much for most of that time. (and I also stopped reporting spit-ups during that time, because I knew it would slow us down!)
I do think that if we go to another hospital that specializes in the issues Faith's had, and she doesn't actually have anything seriously wrong, they'll find it out pretty quickly, whereas now we've been here 16 weeks and all they can say here about her is "intestinal failure" and "functional short bowel syndrome". A group of doctors that are experts in short-gut will recognize right away if she doesn't need their special attention.
I tried to hold out hope that everything would work out, that if we just let her do things and eat like normal, she'd get over her issues and be ok, but it just doesn't seem to be working out that way :(
i've been reading your blog daily as i'm a member of DAP board.
i just wanted you to know that we're thinking of you and praying for you and for faith.
we also just moved to rhode island. so if you transfer her to boston (which, i can only pray, is unnecessary), we would be happy to visit y'all.
all the best, and i hope things turn up for you.
in our prayers,
lindsay
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