Saturday Update

(I have been trying to write this post all day but it was a busy day!)  We met with the Dr. for over an hour and a half yesterday to form a plan for Caleb.  We really like this Doctor he is very smart and intuitive and asks all the right questions.  He asks questions that we have been wondering about as well and it looks like he is going to help us get to the bottom of some of them.  The main area of concern right now is Caleb's inability to gain weight and his recent difficulty chewing and swallowing due to his loss of muscle in his mouth.   So here is the low down:


We were admitted yesterday just after noon.  They asked us to stop feeding Caleb as they wanted to place an NG tube. (it goes through the nose and down the back of the throat into the stomach) That wasn't exactly fun! But finally they fed him formula through the tube.  (he hadn't eaten in 5 hours and it was way past his nap time.  He was pretty cranky) He gagged some on the tube over the course of the evening as he got used to it and he tried to mess with it some, but not too bad.

The doctor gave us a few reasons for putting in the tube.  He said that he wanted us to stop giving him liquids by mouth since there is chance he is aspirating them. He wants to give his lungs a break before surgery.  He also wants to beef Caleb up in prep for surgery. (he is getting over 700 calories just through the tube) They are letting him eat soft foods and he has been doing great with that.  (no gagging while eating, although still choking sometimes) There is also the added benefit that he is starting the process of getting his stomach used to the feeds now instead of having to wait until after surgery.  And Jason and I are also learning how to do it all now as well.  It will actually be easier when he gets the g-tube (a few less steps)

He hasn't messed with the tube at all today.  But he did tell some friends all about him getting it put in.  It was absolutely adorable.  Here's what happened-  I was telling them all about how it happened.  When I was done Caleb pointed to his throat and started "talking." Then he pointed ever so carefully to the tube in his nose and kept "talking." He was SO cute!! I'm praying for the day when we can understand what he says.

I should also mention that night time was really rough.  They only let 1 parent stay overnight so that was the first bummer.  Then I "got" to sleep on this ridiculous excuse of a bed called a fold out chair. I guess the good thing was I didn't really get to sleep in the chair much. (trying to look at the bright side) Caleb was up over half the night.  He only got about 6 hours of sleep.  (he normally gets 12) I got about half that amount.  It pretty much sucked.  Worse than having a newborn because I was in the hospital and in a crappy bed.  Oh and by myself! I guess the other good thing was that the lack of sleep didn't really bother Caleb that much today.  He was his happy go lucky self most of the day.  I got to come home tonight so I'm not sure how things are going tonight but I hope he is so tired that he gets good sleep.  (He hasn't been napping much either, his room at home is so nice and dark.  And he doesn't have people coming in every 2 hours hooking him up to a machine to eat)

Something the Doctor also said was that he probably has reflux.  That is very common in kids with low muscle tone. That is probably why he wakes up at night crying, and it would also explain the constant white on his tongue and the frequent spit up.  So they are going to check for that in one of the tests.

Tomorrow, Sunday, they are going to let us come home on a pass for most of the day then we will go back for the night.  Then starting Monday morning they will start the testing.  We start with a sonogram to check his kidney, pancreas, and liver. (he hasn't had those tested before and they can be issues with Mito kids) Then after that he has a Feeding evaluation with an occupational therapist.  She will watch him eat and begin to figure out some things about textures and other stuff that I don't really know. :) I think we will also meet with the Doctor who will be performing the g-tube surgery. He is also in charge of the testing on Tuesday so hopefully we can get the surgery date set then. (praying that it is Thursday so we can keep things moving.  Otherwise we will have to stay at the hospital until the surgery happens)  Tuesday-they are sending us to a different hospital for a Gastric Empyting Study.  This will help us understand how his intestines are working and make sure they are able to handle what we are putting into his stomach.  At this point I don't think there is any reason to suspect anything is wrong (he has handled all the feedings really well) but we will know more after the test.  Then on Wednesday they are going to do a video swallow test.  They are going to tag the food he eats so they can track it and see if it is going in his lungs or if it is coming back up with reflux.  Somewhere in there we are going to see the dentist at Scottish Rite also.

Ok, so it's about 3 hours past the time I wanted to be in bed and my eyes are closing while I type.  That's all my brain can handle for now (I have mixed up my words so many times today it's comical) so goodnight for now.

Much love,
Jessica

P.S. in my last post I forgot to link to the G-tube page, so here it is...G-Tube page