Tummy troubles

Hannah has started to develop some what-we-think-are gastrointestinal issues.   There are really two separate issues, but I digress…

Constipation.   This started a couple of months ago (a few weeks before we started the Keppra wean).   Where once she was somewhat regular, it became more like a few days in between.   It had gotten to the point that after 4 days, she was so backed up and tight that you could see the obvious pain and discomfort it was causing her.

Suppositories do not work on her (well, they do about 1 out of 10 times).   So we started with the Miralax and a lot of tummy massage and leg movements.  After seeing her GI doc when this started, he suggested using 1/2 cap of Miralax once a day, every day just to help her along.   He thought it could be part of her neuromuscular degeneration process in that her motility isn’t as good as it once was.

Then it got to the point recently where after a few days, we had to also give her prune juice, just a few ounces, to help the Miralax along.   That was only twice, but now we have a big ole’ 64 ounce of prune juice in our fridge just in case.

So far, that seems to have help her “go” at least every other day.

The other issue, and this to me is the more serious one, is the spit up issue.  It started with a few times a week (again a few months ago), and now we are at at least a few times a day if not more.

She will be doing whatever, and you will see a lot of secretions and sometimes even formula come pouring out of her mouth.  Not a lot, but enough to soak up part of a washcloth.   The formula is the one that makes me nervous is because she is fed by G-tube, and this “whatever” is causing the formula to come back out of her mouth!

Also, she has been a bit more uncomfortable during her feeds over the past month or so.  Sometimes, even when she is sleeping, she will act agitated when we start a feeding.   Not horribly so, but at those times (about 25% of the time), you can tell it definitely affects her.

So I called the GI doc today.   Hannah’s local GI doc just recently relocated out of state, so I was transferred to the doc who was replacing him.   He asked a lot of questions and I did remind him that even though she is Gtubed, she does not have a fundoplication.  Since he had never met Hannah nor does he realize how truly complicated she is, I took it for what it was.

What *I* think may be happening is that either her reflux has gotten worse (even on 15 mg of Prevacid twice a day) which is causing her to vomit or spit up whatever is sitting on the top of her stomach or perhaps she may have some kind of stomach irritation (ulcer, inflammation, etc.).    On top of that, I think that she then may be aspirating what she is refluxing up, because on the rare occasion, we see formula come out of her trach (which of course wants me to get answers immediately).

He had mentioned considering changing her G-tube out to a GJ tube (goes lower down), but I don’t really think that is the issue.

Perhaps it is time for a fundo (which many Gtube kids have).    But a fundoplication means surgery, and that scares that crap out of me.

So we agreed that she needs some testing done to see what is going on.   He suggested doing a gastric emptying study as well as an endoscopy so they can see the path everything is taking.   Since she has to be put under for these procedures, I asked him if he could coordinate doing a broncoscopy at the same time with Hannah’s pulmonologist since it hasn’t been done since she was trached, and this is something that we definite would like to have done (especially to see if there could be the possibility of getting out the trach).

In the meantime, we are going to slow down her feeds even more.  Even though he was surprised at how little we are giving her at a time as it is.  I hope that they can get these scheduled quickly, but this is Vegas, and I’m not holding my breath.   Although I do think I may call her pediatrician and see if she can help move the process along!   If she is aspirating this stuff, this could be very serious!

I just hate not knowing what is bothering her and why she is spitting up, especially the formula!