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...
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...
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