Squeaking out some words, and some GI blues...

We have all moved to the PCU section of floor 7 here at CHOP.  It seems a little more calm than the PICU. But, otherwise, we are still in the hospital and wanting to be home.  I've dabbled a bit in some trach care the past two days. It is daunting and scary, but I'm hopeful that with time both Val and I will be old pros at it all.

Samantha has been mostly good with one bad thrown in....

Let's talk about good first.  :)

One good is that she is getting some air past her vocal cords and is squeaking out some words. She usually can get a syllable or two out before her little squeak of a voice poops out on her. But, it's sound, and it's hers.   I'm sure with time and perhaps a speaking valve she will continue to improve her speech.  We will also most likely get a communication app for our iPad to help her while she is regaining her speaking voice.  Perhaps we will even teach her some simple signs to help her along.

Yesterday, we ventured into the play room for the first time in her stroller.  It was so great to see her sitting up. Sam is still on some heavy duty drugs. They are weaning the narcotics slowly to avoid withdrawal symptoms. Between the drugs, all of the laying around, and her original motor issues, she is a bit wobbly when trying to be upright.  But progress is definitely being made.  The PT yesterday had me stand her on her bed and she was able to put some weight on her legs.  And, what did she do one she was upright?  The little sweetie, while standing, reached out and gave me a big hug.  Yes, I had tears in my eyes.

In general, she has been much more awake and squirmy while in the bed. And, she has been dazzling her visitors with that adorable smile of hers.

So yes, lots of good is going on.  There is just one problem....

Her GI system does not seem to want to cooperate with, well, we aren't sure. When they run feeds through her G-tube she is distended and very full of gas.  She HAS been passing stools once a day with the help of miralax, colace and the occasional suppository, but they are completely liquid.  Occasionally she has been throwing up her feeds, usually in the morning.  Her labs seem fine, each time they run them. The doctors aren't sure what it is (meds, formula, hospital fear etc)

When she came into the hospital a month ago (yes, today marks a month inpatient), she was eating and drinking by mouth. She didn't always eat as much as she should.  And, she would sometimes go a few days without a bowel movement, but otherwise was ok in terms of GI issues.  She never had formula in her life.  The little stinker never took to a bottle so I just breastfed her until it was time to start eating foods. But, she never had any allergies to food and handled milk, cheese etc fine.

We talked with the GI attending today who agreed to try a new formula for the weekend, Elecare. We are starting it slow and will cut out her miralax.  They had upped her miralax to the max dose while inpatient and perhaps that was just too much for her belly?  We will add suppositories to help with movements.

They plan on doing an emptying scan next week to see if she has delayed gastric emptying. As she just got the G-tube two weeks ago it is too soon to turn it into a GJ tube (for those who don't know, don't ask...I'll explain later if needed). Frankly, I'd like to hold off on any more procedures if we can. I keep thinking this is a g-tube/formula/narcotic issue more than a stomach issue. But, perhaps that is wishful thinking.  I know that mito kids can and do have severe GI issues.  I was just hoping that Sam could escape that for the time being since she has so many other new things to worry about at the moment.  Not to mention, I'd like to try to see her eat regular food (by mouth) before we assume she can't.  Kids with trachs can eat as long as they can swallow safely.  Hopefully we can also do a swallow study and if she is safe to eat certain textures perhaps we can use the tube for supplementing/meds only.

One comment the GI made struck me today.  He mentioned that perhaps Sam always had slow motility but had self regulated her food intake (aka, didn't eat enough) to deal with it.  Once she was in the hospital (and not moving as much and taking lots of narcotics), it might have made an already slow system even slower.  I will concede that his theory may make sense. But I think I, and Sam need more time before we do any other medical procedures.  I want to make sure we aren't moving too fast.


In summary, lots of good with the exception of GI issues.

As always, thanks so much for all of your thoughts, prayers, and vibes.  They are always appreciated.

Until next time,

Monica