Well, Azer just got done with his GI study. He laid down on a table
and had a big x-Ray machine over his stomach area. He then was
supposed to drink
large gulps of the barium. But he couldn't drink enough of it, so
unfortunately he had to have an NG tube put in temporarily. They shot
barium down the tube and into his intestines, stomach and esophogas.
The good news is that he does not have SMA syndrome or any other type
of compression. All the "tubing" is where it's supposed to be. We did
see the reflux however, so that's probably why he has such a hard time
eating. He probably doesn't know what it feels like to not have it.
Azer said the NG tube was really nasty. He was gagging and crying
through the whole time. He says the back of his throat hurts a little.
After they pulled it out, he said he's hungry. I'm going to order food
now!
Showing posts with label SMA Syndrome. Show all posts
Showing posts with label SMA Syndrome. Show all posts
June 1, 2010
May 31, 2010
No Vomiting
Well, Azer still has not been having any vomiting. Today the CF doctor came in and talked more about possible SMA syndrome. Then, the GI doctors came in a few times and their theory is that it's possibly enzyme intolerance. So, we'll find out tomorrow who is right. Tomorrow they are doing a GI-study. He will drink some liquid containing calcium, and then he will go to radiology throughout the day so they can see how things are moving through his GI system.
It looks like Azer may possibly be getting the G-tube on Wednesday. The GI doctors seem to be ready to get that ball rolling, so we'll see what happens. Regardless of whether Azer gets the G-tube or not, we still need to find some enzymes that will work for him. He is still taking Pancrecarb, and the supply will not last forever, so hopefully they can find an enzyme that will not cause vomiting in him. Darn FDA...
Azer has been saying he's hungry today, but hasn't eaten much during meals. We have not been giving him any milkshakes, or Scandishakes, and have been letting him eat as he feels. No pressure. I guess that's how it should be. A Child Life specialist came in and brought a doll and talked about the G-tube with him so he could understand it. He got to touch and feel the tube and the button, and different catheters. She was very honest and down to his level, and told him that yes, it will be sore for a few days, but that in the long run, this will be a great thing for him. So, it sounds like after he gets the G-tube, he'll have to stay out of the pool for a few weeks, but after, he should be able to play ball and go swimming, and be a kid again.
It looks like Azer may possibly be getting the G-tube on Wednesday. The GI doctors seem to be ready to get that ball rolling, so we'll see what happens. Regardless of whether Azer gets the G-tube or not, we still need to find some enzymes that will work for him. He is still taking Pancrecarb, and the supply will not last forever, so hopefully they can find an enzyme that will not cause vomiting in him. Darn FDA...
Azer has been saying he's hungry today, but hasn't eaten much during meals. We have not been giving him any milkshakes, or Scandishakes, and have been letting him eat as he feels. No pressure. I guess that's how it should be. A Child Life specialist came in and brought a doll and talked about the G-tube with him so he could understand it. He got to touch and feel the tube and the button, and different catheters. She was very honest and down to his level, and told him that yes, it will be sore for a few days, but that in the long run, this will be a great thing for him. So, it sounds like after he gets the G-tube, he'll have to stay out of the pool for a few weeks, but after, he should be able to play ball and go swimming, and be a kid again.
May 29, 2010
Threw up.... again
Azer had two tournament baseball games for today. He was excited last night about it. So, this morning, I woke up early so I could get Azer drinking his morning milkshake, and to hope that he could get it down before he had to start running around in the hot sun. Well, things didn't exactly go as planned. He took his meds and had a few sips of the Scandishake, and then had to run into the kitchen and threw up in the sink. He seemed perfectly fine after he was done throwing up. Plenty of energy, no fever. Everything was fine, just like after he threw up yesterday.
I was so frustrated. I mean, I was wondering how the heck was he going to play baseball, basically all day, on an empty stomach with practically nothing in it? I was really emotional and stressed. So, I called the CF doctor on call. She was great. She said as long as he stays hydrated, and gets salt with each thing he drinks, that he should be fine playing baseball. So, I gave Azer a Caprisun, and sprinkled some salt on his tongue, and he kept it down fine.
Azer was fine during the first game (they lost miserably though ... the team we were playing against was used to playing tournaments). I kept Azer wet, and kept giving him salt after each half-inning. After the game, Azer had lunch with a team mate and his coach. He actually ate food, which is amazing.
We lost the second game too, but luckily Azer wasn't too disappointed. He looked pretty lively on the way home. When we got into the door, he looked tired and like something wasn't quite settled with him. Yep ... he ran to the bathroom and threw up again. I called the CF doctor again right away. After talking with her for a while, she was thinking Azer had something called SMA syndrome. She said it wasn't serious, and that it was something normal. I don't really understand it completely. When I googled it, it looked pretty serious to me. She said to put Azer temporarily back onto his old enzymes, and see if the vomiting goes away. If it does, then we'll have to adjust his new enzymes somehow. The doctor said she really wasn't concerned with how Azer sounded. She said he sounds alright, and to just try to experiment with the enzymes and see if things will change through the weekend.
Azer has another game tomorrow. Basically, his team plays until they loose.
So, off I go to "experiment" on my child.
I was so frustrated. I mean, I was wondering how the heck was he going to play baseball, basically all day, on an empty stomach with practically nothing in it? I was really emotional and stressed. So, I called the CF doctor on call. She was great. She said as long as he stays hydrated, and gets salt with each thing he drinks, that he should be fine playing baseball. So, I gave Azer a Caprisun, and sprinkled some salt on his tongue, and he kept it down fine.
Azer was fine during the first game (they lost miserably though ... the team we were playing against was used to playing tournaments). I kept Azer wet, and kept giving him salt after each half-inning. After the game, Azer had lunch with a team mate and his coach. He actually ate food, which is amazing.
We lost the second game too, but luckily Azer wasn't too disappointed. He looked pretty lively on the way home. When we got into the door, he looked tired and like something wasn't quite settled with him. Yep ... he ran to the bathroom and threw up again. I called the CF doctor again right away. After talking with her for a while, she was thinking Azer had something called SMA syndrome. She said it wasn't serious, and that it was something normal. I don't really understand it completely. When I googled it, it looked pretty serious to me. She said to put Azer temporarily back onto his old enzymes, and see if the vomiting goes away. If it does, then we'll have to adjust his new enzymes somehow. The doctor said she really wasn't concerned with how Azer sounded. She said he sounds alright, and to just try to experiment with the enzymes and see if things will change through the weekend.
Azer has another game tomorrow. Basically, his team plays until they loose.
So, off I go to "experiment" on my child.
Subscribe to:
Comments (Atom)