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...

Museum, playtime, and surprises!

Friday, February 27 (evening)

Well, I accomplished everything on my "to-do" list today. I spoke with both Dr. Soden and Dr. Partrick today. Dr. Soden is a nice guy. He really is. But his favorite word seems to be that yucky "T" word. We spoke for at least 10 minutes or so this afternoon, and I think he said it at least 15 times during our conversation. When he left, I really had the impression that his opinion is that Dave and I should talk about it and go to Pittsburgh for the transplant evaluation.

When Dr. Partrick came to talk to us tonight, he was much more moderate in his approach to things. He is optimistic that we will be able to get her to at least 50% enteral feeds, if not more than that, by just taking things slow with the continuous NJ tube feeds. If this is the case, and her liver numbers stay stable and/or get better, we won't have to talk about a transplant or Omegaven. He said that even if she fails this attempt at feeds, it doesn't necessarily mean total failure, and they will just take it down to whatever amount she did tolerate and send us home on a combination of continuous feeds and TPN. We felt much more optimistic after talking to him.

Yesterday we took Noah to the museum with Dave's parents and Noah's cousin, Jordan. Noah LOVES the museum, especially the dinosaurs. Next time I think we will save the dinosaurs for last, because once he's seen those, it's hard to get him interested in anything else. It's nice now that we have military ID's, we get in for free. Noah also likes spending time with Faith, he is a good big brother.

Faith has been very happy the past few days, just full of smiles for everyone! We took advantage of her good mood earlier today and spent at least an hour playing on her mat on the floor. We're working on getting her to realize she can control her arms and reach for the toys that hang over her. She seemed like she was starting to understand, before she started to be too tired and lost interest. Hopefully next time, Sheryl the PT will be able to come and give me some more pointers on how to help Faith start doing some of the things that are developmentally appropriate for her age.

For the past couple of days, I had said we should feel in Faith's mouth and see if she's getting any teeth yet, since she's about 3 1/2 months old now, and Noah got his first tooth right around 4 months. So tonight, I stuck my finger in there and was shocked to feel that Faith has her first tooth!! We think it's the bottom left tooth, and it probably came through a few days ago, based on how much of it is already through the gum.

On a much more negative note, we also got an unpleasant surprise today. Dave lost his job. They gave him the impression that he would still have a job until he leaves for basic training (which has been pushed back now until August, for the time being), and told him to come back today and be there at 8:30, and by 9:00 he had called me to tell me they let him go. Please keep us in your thoughts and prayers during this tough time, and if you know anyone who's hiring or looking for someone with 2 bachelor's degrees in Criminal Justice and Social Work, let us know!

Wake-up call

Friday, February 27

Wow. I just got woken up by a phone call from Dr. Puder in Boston (the one running the Omegaven trials). I emailed him last night, just to sort of update him on the situation and the fact that it's looking more and more like Omegaven may be our next step... and he called as early as he possibly could without being considered rude (7 AM our time).

Once again, he said that if we need to go to Boston and get Faith on Omegaven, just to let him know and he will get me in touch with the people there I need to talk to (the social worker and intake nurse). He said Tricare has paid for it in the past, so that was good news since that is what Faith will have for insurance as of the 1st of March. He explained the process a little more, too.

We would go to Boston. There would be an inpatient stay of about 48 hours (that's nothing!) and then we would stay somewhere else (he said there is hospital housing that is around $20/night but sometimes free). We would have to stay in Boston (or the area) until Faith's direct bilirubin measures less than 2. Just to give you an idea, right now it is 6.1 (which is high enough to qualify under their compassionate use guidelines!). Then we would have to go back every 2 months, or until Faith is off TPN. But he said they would work like crazy to get her off the TPN, and that they have experimental drugs for motility and stuff, too.

He thought they were crazy for bringing up the small bowel transplant, and was surprised that Dr. Soden is the one who mentioned it. He said he couldn't believe it, and that the thing with the small bowel transplants is that they don't even really work. He said he would be much more in favor of turning things around for her liver so that she can have the time to get the rest working.

SO- on my agenda today:

Talk to Dr. Partrick and Dr. Soden about what we do if feeds don't work. Ask if we can get on Omegaven here, and if we can't, let them know we're looking into our options for that as our next step.

Email the leaders of the trial in Omaha to see what they have to say.

(Oh, and go to Target and pick up my new glasses.)

Progress, and the "T" word

Wednesday, February 25

Well, I'm happy to say that some progress has been made since my last post. Faith no longer has the tube down her mouth to keep her stomach empty, and is getting 4 ml's of breastmilk per hour down by feeding tube. And, I finally got everything put away at our house, so all that's left to do there is the actual real cleaning that's been neglected for the past 5 months...
They stopped feeds on Saturday night, because her output from the OG tube (the one down her mouth) had increased, so they interpreted that as not tolerating feeds. They gave her a couple of days of rest, but her liver numbers for this week were still pretty bad (although not quite as bad as they were last week).
Over the weekend, the GI doctors came to see Faith, and for some reason they decided to mention that if things don't turn around soon for Faith, she might need to be listed for a small bowel transplant. That would mean first going to Pittsburgh to be evaluated, and then transferring to a hospital that can do a small bowel transplant (the closest one is Omaha, although if it came to that, I think we'd rather go to Boston, because at least there it would be more likely that we could get her on Omegaven for her liver). Pretty much everyone thinks it was WAY premature for them to bring up the "T" word, though. There are still a number of options that haven't been explored, not to mention Faith has pretty much acted like she has short bowel syndrome (aka "short-gut"), and not all short-gut kids have to get transplants... So we don't seriously think that will happen.
On Monday Faith went to fleuroscopy (where they do the Upper GI studies) to have them confirm the placement of her feeding tube, and advance it past the area they operated on, so that they could re-start feeds and get her off the TPN. I wish they would have taken her down there a week ago! I was looking forward to seeing it, to see what her intestines look like now that they tapered them (does that make me weird?). Well, pretty much as soon as they put the barium down her tube my spirits lifted. It was neat to see her intestines all nice and narrow and the same size, and we could see the staples where they did her tapering. And right away we could see that what they had assumed the whole time about the feeds and her intestines was completely wrong!
Assumption #1- The feeding tube was in the part of her intestine that they operated on. Which led to Assumption #2- The part they operated on wasn't working, or was actually working backwards. Assumption #3- Since the feeding tube is transpyloric, the pyloric sphincter (the opening from her stomach to her intestine) can't close all the way, so the milk they fed her through the tube could easily go backwards into the stomach, where it was being sucked out by the OG tube hooked to suction.
Well, everyone knows what they say about assumptions, and it has rung true yet again. In reality, we could see right away that the feeding tube was doubled in her stomach, so they thought it was quite a bit farther than it really was, and it actually was just barely past her stomach! I immediately got a million times happier, because suddenly everything made sense. The feeding tube was just past her stomach, so it made perfect sense that the milk would come back up the tube into her stomach that was hooked to suction! And what little bit of milk that was going through when they were doing the feeds was coming out as perfectly normal breastfed baby poop! Once I saw that, my mood changed dramatically and both Jan (the nurse) and Rose, the CA (clinical assistant), could tell that all I wanted to do was see the doctors and tell them they were wrong!
As soon as I saw Dr. Sandoval, that's what I did, and I told him I wanted the OG tube put to gravity, and that they should re-start feeds. He agreed to put it to gravity, so then Jan convinced him to just take it out. They re-started continuous feeds at 2 mL/hr through the feeding tube. Then he took some tissue samples from her rectum for them to biopsy to rule out Hirschsprung's disease.
Last night, they tried to increase her feeds to 4 mL/hr, but she got really fussy so they backed them to 3 mL/hr. Then at noon today they put them back up to 4 mL/hr, and they will continue to increase by 1 mL/hr every 24 hours. They are taking it extra slow this time to really give her intestines the chance they need to get used to working. She threw up one time last night, just a little, as Joanna was doing a diaper change and moving her around. She hasn't thrown up since then. As long as she doesn't throw up tonight, I told Dr. Sandoval today that I want to be able to try to feed her by mouth tomorrow and see what happens. If it works, we'll have them take the feeding tube out and work her back up on oral feeds.
Faith has grown quite a bit over the last couple of weeks, and is now about 9 lbs. She's starting to outgrow her newborn-sized clothes, especially her sleepers, so we brought down a bunch of her 0-3 months clothes. I really didn't want to, but it makes more sense to have her wear them here than it does for them to sit at home. I hope that she will still fit her going home outfit when that time comes...
We are hoping and praying that maybe this time feeds will work... I don't know that we'll make it home for St. Patrick's Day (the next holiday on the calendar), but we are really praying that maybe we'll be there for Easter, which to us is the next REAL holiday... that gives us 46 days...