Boston hopes

I've been looking alot at Boston Children's website in the past couple of days, just doing everything I can to familiarize myself with the hospital and the services available there, both for Faith's healthcare and for my own sanity (and the sanity of whoever joins me there). In all of my reading, I've found that not only do they have the Center for Advanced Intestinal Rehabilitation (the CAIR program) that I've mentioned before, but they also have a Center for Motility and Functional Gastrointestinal Disorders. Technically, Faith would fit under the scope of both programs. So, I am feeling very hopeful and positive that with the help of the experts in these two programs, we will be able to get Faith's gut working like it should, and maybe even get her eating by mouth!
Anyway, that's all I wanted to say :) Click on the links, read more about the programs, and some of the things that might be in store for us!

Boston bound... maybe...

Thursday, March 5
Well, we've officially started the process of organizing a transfer to Boston. We haven't talked to Dr. Soden or Dr. Partrick since making the decision and getting things going, but we can pretty much guess how they will react, and we don't think it will be terribly positive... It's a lot of work to figure out the transfer, but we think it's the right thing to do. I've talked to the social worker and the nurse practitioner in Boston now, in addition to Dr. Puder, and filled out our intake form, and we talked to our case manager here to get her on board and working towards our goal of a timely transfer. She'll be assembling the documents they need to find out if our insurance will cover the transfer, and faxing them to the NP in Boston so they can start working on that. Then the social worker said it usually takes a couple of weeks to get the insurance approval (they deny a lot because since Boston does the Omegaven, which is experimental, it raises a red flag for insurance companies when babies transfer there). So, if all goes well (and she still needs it) we could leave for Boston by the end of the month.
I say if she still needs it because right now Faith is being fed at a rate of 15 mL/hr, which is about 58% of her goal of 26 mL/hr. They are going to hold her at 15 overnight (instead of increasing to 16 at 11, like they normally would), and increase to 16 tomorrow, and then hold her there through the weekend. 16 mL/hr would be about 62%; the idea is to get her to the highest rate she can possibly tolerate, preferrably at 75% or above, which would be about 20 mL/hr (obviously 100% is ideal, since every day that the Broviac is in increases her risk of developing a central line infection, which she's luckily not had at all so far, but can be very serious). On Monday we'll have her latest liver numbers, and we can re-evaluate the plan and how much we should continue to push her to tolerate. From what I've read, I think they have to be at 40% or less for feeds in order to qualify for Omegaven, so she'd have to stop tolerating the amount she's currently at... (although I'm waiting on confirmation on that from Boston)
So, as of right now we're unsure of whether she'll truly need to go to Boston. If she doesn't qualify for Omegaven, I'm not sure we'll go, because we can go to Omaha if she is discharged on a TPN/continuous feeds combo and work on intestinal rehab there, a lot closer to home. But, we're still going to make sure we have everything organized and set up, so that if she does need to go to Boston, we're ready for it. I think of the time when we were all set to go home, and then she stopped tolerating feeds and we had to stay, and I think that the more work we do, and the more we're set to go to Boston, the more likely it is that she'll just keep tolerating feeds and we'll end up going home instead.
I wish I would've known about intestinal rehab a month ago... I think we would've had her transferred then and it would have saved some of the strain on her liver... but hindsight is always 20/20, and I know now that if I ever read about another family going through the same struggles we've faced, I can direct them to the resources they need to get their child better.
Please pray that God will direct us in the way we should proceed, and that he would let Faith show us what she will need... if she's going to stop tolerating feeds, let it happen soon, and not get our hopes up yet again, and let us know we're making the right decision in getting her transferred to Boston...

decisions...

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...