Wednesday, January 11, 2012

Appointment update

Jax checked out great at the appointment - woot!

So I had a talk with the doc about Jax's great tummy progress.  She wants to see how he does after tomorrow since tonight is his last dose, even though it's next to nothing of a dose (1.5mls). She is VERY interested to see if the steroid is helping him with his GI issues. She's contacting Jax's GI specialist to discuss the possibility of the steroid being the "answer" or if Jax's body is just maturing and getting stronger on its own. She said she has seen this sort of steroid (anti-inflammatory) help many patients for various reasons. She said that many people with Chron's Disease or Colitis use steroids to make their intestines feel better, so this wouldn't be too far fetched.
 

I made the comment that he couldn't possibly be on a steroid like that long-term, and she said he absolutely could if the benefits outweigh the risks, and the risks are watched. Relieving Jax of GI pain and volume intolerance/vomiting so he could get tube-free is a pretty big "value" she said.
So we'll see.

Also, she said he's pretty much under complete "Asthma" protocol now. She said she's seen children grow out of asthma, but not typically the ones who have underlying lung issues like this from underdevelopment. I asked if his lungs still looked "damaged" the way they did on the X-Rays that Jason and I saw when Jax was an infant, and she said they look "asthmatic" (Jax had a scan at the hospital).

She thinks the higher dose of his preventative is good for the winter months to help control the symptoms. I asked if we should be doing anything different, and she said to just keep his room as clean as possible and change his bedding every few days. She said to keep pets out of his room, and I said we don't have any anymore, but he stays at friend's houses that do. She said no problem, just vacuum and dust the room he'll sleep in and close the door to the pets and always pack the inhaler. Being around them shouldn't be a big deal.
I can handle all that! I'm just glad something is DIFFERENT (his inhaler dose) so we may not get to such a point of lung issue when sick again.


So we'll see how Jax does over the next few days with stopping the Orapred (Prednisolone) and gear up for some late snow coming tonight - where has the snow been this winter?? The boys will love to use their new sled!

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