Bug update

[gwywnnydd]

We had to get the G-tube replaced today. the one that was originally placed had worn out, and the one-way valve was no longer one-way. This procedure went quickly, but *did* hurt some, and there was outrage involved. We switched to a different style tube (after weighing the pros and cons of the two). Which, of course, means a complete refit of connection tubing :}.

The Nurse-Practitioner commented on the Bug's high pain tolerance. He pretty much stopped crying as soon as I picked him up and he could tell it was over. It still hurt, you could tell, but he wasn't fussing about it.
Gee, what a surprise. Considering who his parents are, I mean ;).

Comments

[burgunder.livejournal.com]

New tube doing well so far?

[gwywnnydd.livejournal.com]

So I'm told.
I had to go to work almost immediately after getting him home, so I have to rely on Daddy's reports.

But maybe, in a couple of hours, I can go home . . .

[danaid-luv.livejournal.com]

Err? Huh? For the un-informed, please explain a bit? Stomach tube? Tubes in his ears?

[gwywnnydd.livejournal.com]

Gastric tube.
My boy has Nephrogenic Diabetes Insipidus (http://www.ndif.org), as do I (and other members of my family). Getting him to take enough formula to grow on has been a *huge* challenge, and the specialists finally decided that a gastric tube was the way to go, since it allows us to feed him while he sleeps.
Since it's been placed, he's bounced back in a really spectacular way, but it adds another layer of complications to caring for him.

[danaid-luv.livejournal.com]

Wow. I spent some time crawling around the site... Would you figure he has X-linked or Autosomal dominant? I'm awfully sorry about it all....but it sounds like you're getting a handle on it. How long do you suppose he'll need the tube?

I know--20 Questions. Tell me to pi*ss off at any time. *nods*

[gwywnnydd.livejournal.com]

X-Linked. We've documented it in my side of the family pretty conclusively (Me, Brother, Mother, Grandmother, and one uncle who died in infancy).

He'll need the tube until he's taking enough food to maintain a healthy growth rate. Current estimates are 1-2 years.

If you come up with a question that offends me, I'll tell you to p*ss off. Until then, ask away!