Waiting, waiting and more waiting
Update - The x-ray came back fine. No twisting, no blockage, no reason for anything. So typical when it comes to Colby. So my new decision is who do I call now? I just got off the phone with my wonderful friend Sara who so conveniently for me works for the neurologists office. We haven't heard if we're going forward with the deep brain stimulation or not. Hopefully I'll hear something this week. Tomorrow morning at 9:00 I'll call the GI doctor and see if she has more tricks up her sleep because the drug that was helping before isn't working any more.
My own totally untrained opinion is that the dystonia is causing the vomiting. So short of keeping him completely drugged and lethargic his muscles will continue to contract and spasm and cause him to vomit forty times an hour. Forty may be a slight exaggeration but over ten and possibly less than twenty. I just gave him some clonidine which will relax him because it lowers his blood pressure. This will cause his muscles to relax and I'll have approximately 3 hours of vomit free time.
I hate doing that. One because it just stinks to have to drug him for any reason. Two it's messing with blood pressure which with kidney damage is always a fine line to walk and three because it can cause rebound high blood pressure. But his poor little face is burnt and red because of all the stomach acid he's thrown up today. His ulcer is aggravated and he's now throwing up blood. Seriously four year olds should not throw up blood. It's just not right.
Well it's been ten minutes. He's starting to calm down and he may even fall asleep. I know he needs the break. The last thing we need is to give him more ulcers or even eat away the lining in his esophagus. Something I actually worry about considering my uncle died when he was 29 because his cancer started in his esophagus. I don't need to add that to the list of things I have to stress over.
For now the sun is shining, Colby has quit screaming, I've rubbed some thick salve on his cheeks and I'm going to sit here and listen to the birds chirping outside my window.
I'm waiting to hear from the doctors office. Colby's feeding tube has been backing up and exploding tube feeds out if for about a week. It's a new feeding tube. Only three weeks old. They are supposed to last six months to a year. To change it I have to drive two hours to Salt Lake City and go through the special procedures lab. They don't have one of those up here at either hospital. It's kind of a pain. a four hour trip for literally a five minute tube change.
I called the doctor up here to see if maybe they would just order an x-ray here with a little contrast in it to see if his intestine is twisted (major ordeal, bad thing) or if his tube just got blocked with the original contrast they put in it or if the tube is just faulty.
Colby is throwing up more than usual and is acting like his stomach hurts. Right about now is when I wish those things they had on Star Trek where they just swiped it over the forehead and it told you what was wrong was an actual invention. It would be so much easier. Could someone get on that? Please! Actually "they" are on it. All those really smart people who do research have actually started mapping brain waves and identifying what they mean. If I were really together I'd find the awesome article I read on it and link it up. But since I'm waiting, impatient and kind of irritated I don't want to. Sorry I'm kinda being a brat like that today.
Here's the fun part when it comes to Colby. If they just order the x-ray up here there will probably be some problem that will require the drive. If I drive to SLC and they take a look down there, there will be no problem. See my dilemma? Seriously I need that mind reader. It should be standard issue. Oh your child is non-verbal here ya go. Just swipe this over his forehead and it will tell you what's wrong. I think it would be great. Of course then you'd have a lot of moms saying their kids were non-verbal when they were like three months old just so they could get one. Hmmm maybe they should be standard issue at birth? Nah that would take the fun out of learning what your kid is like. I've made an executive decision it's only for non-verbal kids. And now that I'm rambling tell me what you think? Would you want one if you knew your child was going to grow up non-verbal?
Here is a link to the newest donation button for Colby's fundraising account. This ebook is for fondue recipes.