Faith's Place: broviac

Showing posts with label broviac. Show all posts

Friday, March 13, 2009

Four months old!

Friday, March 13

Faith is four months old today! It's hard to believe... she's starting to act more and more like a four-month-old though, and I know from what I've read of others' experiences that once she's on the Omegaven and her liver starts getting better, she'll be even more like a "normal" baby.

She loves the little fishies on her swing (the mobile) and gets so mad when they stop! And she's started holding her hands together a lot more, playing with her fingers... and she's started trying to reach for toys hanging in front of her! She's started trying to roll over from back to tummy, and she's getting better with head control, but is probably a little behind there... I think once I can start wearing her more in the wrap that will help.

I am asking a million questions a day now, just trying to learn all of her stuff at a more gradual pace, rather than the cram-session that usually accompanies NICU discharge (or so I hear). I find it all intimidating, but I think it'll be ok... there's just SO much to remember, and some of the stuff (especially involving her Broviac) is SO important to keep her from getting an infection! She's made it 4 months now without ever having a line infection, which is amazing and wonderful, and I want to keep it that way!

Faith will be having her surgery at about 9:00 AM tomorrow. I've been searching all over for pictures of what her tube will look like, but can't find anything, and really can't picture myself what it will be like. Dr. Potter explained it yesterday (as best as Dr. Potter can explain anything!) and it will be like a regular G-tube with another tube like the one she has in her nose fed down it and to her intestine. I've seen pictures of the regular G-tube, but never anything quite like what he described.

When we were debating the G-tube before, everyone whose kids had them said they weren't a big deal, and when you eventually take it out the hole closes up and looks like another belly button... so I thought it was kind of funny, Faith doesn't have a "normal" belly button, and as it is now what the surgeons tried to give her probably won't look much like one with the extra times they've had to go in that incision, but she does have two scars from her chest tubes that look like belly buttons, and then she'll have a third one from the GJ-tube. So when she's older if anyone says anything about how she doesn't have a belly button (kids are mean!), she can come back and say she actually has three :)

I heard from the Boston social worker (Stephanie) today; I had emailed her asking if they had resources for getting from the airport to the hospital. Thinking about the flight, flying by myself with her and all of her "accessories", is kind of scary... please pray that I'll have peace with that. I'm not a big fan of flying anyway, and have only flown alone a couple of times, and have never flown with a baby... and I'll have to make sure that everything is timed right that she'll be all taken care of for meds and TPN and feeds and everything... her feeds last 4 hours, so I'll have to start a new one right before we leave and then the next one right after we land... and then I have to make sure that I've pumped right before we take off and pump again right after we land... I'm looking at booking a red-eye flight so that it's non-stop (it's the only non-stop we can afford), so we'll be leaving Denver around 11:30 PM and getting to Boston at about 5:00 AM. I find all of this slightly overwhelming... so many things to think about all at the same time!

I'm still waiting to hear from our case worker here (Jann), she's supposed to be talking to a case worker there today hopefully, to find out more about the insurance stuff, like how likely it is that they'll pay for everything if we go out there on our own. I'm holding off on booking our flight until I hear confirmation from her that the insurance most likely will pay. We know they might not pay for the Omegaven, but that's not a big deal b/c the hospital pays for it if the insurance doesn't, but theoretically they could deny everything else (labs, inpatient stay, etc) saying it has to do with the Omegaven. So I want to know they probably won't do that before I book the flight, since we can't afford to do this if the insurance won't pay anything.

Anyway, I could go on all day about all the little things that have me nervous/worried right now, but I won't, I'll just post some cute pictures instead :) Stay tuned tomorrow for cute pictures without the tape mustache!

Faith got all dressed up for her four month "birthday" :)

Faith was feeling spring-y yesterday :)

Tuesday, March 10, 2009

a little yellower, field trip, and more info

Tuesday, March 10
We thought towards the end of last week that Faith's eyes are looking more yellow than they had been, so we knew her numbers would be different again. Her labs this week are a little worse, her direct bili is back up over 6, and her ALT (liver enzymes) went up to 325 from 299... I really hope the Boston stuff can happen quickly!
We took a field trip this morning to fleuroscopy again. I think Faith has a thing for Fleuro Room 1, she's down there at least once a week. As much as we don't want her to have a more permanent feeding tube, we don't want her to have NJ tubes put down every other day. So, we're hoping they'll decide soon to put in a G-J tube to save her some of that stress. They've said they won't even think about it for another couple of weeks, though.
We don't like the idea of tube feeds, but really until they figure out why she's not able to tolerate feeds to her stomach anymore, it's our only option. So we've come to terms with the fact that she may be on tube feeds for awhile... and realistically, she may be on a combination of tube feeds and TPN for quite awhile, since there's no magic wand to wave and suddenly make her tolerate full feeds.
I've been paying more attention to her Broviac care, since I know I'll have to take that over soon. And I've been asking more questions about everything, too, just to try and prepare myself for all of it.
I realized the other day I haven't really posted much info about the Omegaven, even though I've talked about it alot. There is a good amount of information on this website. It's not the only reason we want to go to Boston though, we are really looking for a second opinion on all of Faith's issues, and we're hoping that since there is a whole team of doctors there that specialize in issues like hers, maybe they'll have some different ideas and will be able to get things working like they should.

Thursday, March 5, 2009

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...

Tuesday, March 3, 2009

pictures

Sleeping like a little angel... the only reason she's tolerating a hat on her head is because she had a dose of Ativan shortly before this, to replace her feeding tube after she pulled it out!