Wednesday, June 10, 2009


Yesterday, Seamus went to the GI doc to have his tube looked at. It is infected so they took a swab to culture. But the big shock was his weight has gone down again. The last time he was weighed at GI clinic was 6 months ago and he's back to the same weight. Considering he already has a feeding tube, it seriously concerned Dr. C.

He gave me the serious talk about how his weight will affect his lifespan and he has to grow. I knew all those things but it just threw me for a loop because I walked in there expecting him to just prescribe some new cream not sit with him and the nutritionist for half an hour coming up with a new game plan.

So the end result is we have to increase his feedings by two hours and also increase the hourly amount. We have to work that around his 3 Miralax doses he gets through his tube throughout the day. We tried it last night so he got Miralax at high speed, then his feeds for 10 hours, then another Miralax dose at high speed this morning. This all resulted in a big vomit, which kinda defeats the entire purpose.

And we haven't even figured out how to handle the enzymes. He gets 9 enzymes before his feed and 9 after but now since he's getting more food, we may have to wake him up in the middle of the night to give more. I'm afraid if we don't, his stools will get even stickier and he'll end up with even more blockages, which again defeats the whole purpose.

Ugg, I'm just so frustrated. We're going to have to tweak it each day until we figure it out. I'm also worried because I think Seamus started understanding some of the scary stuff yesterday. He could tell I was upset and he even though he didn't understand all the dire stuff Dr C was saying, he seemed uneasy too.


Cindy said...

Poor kid. Life with a CF'er is never easy, is it? I thank God every day that Reilly doesn't have a tube (yet, knocking on some serious wood) and I don't have to deal with that yet. I'll keep you guys in my prayers that you find the right combination!

Tooter's Mommy (Courtney) said...
This comment has been removed by the author.
Tooter's Mommy (Courtney) said...

I wish I could be there to give you and Seamus big hugs!!

I had so many typos last time I typed this that I had to delete it.

Zoe Isabella said...

I'm sorry for such a yucky doc visit. :( CF really does suck. I hope and pray things get better and he starts gaining.
Hang in there...

Rebecca said...

Big hugs for you and for Seamus. Really hope that you can work out a feeding regime that he can tolerate and which will put some weight on him.

Stay strong.


Becky, Seren & Dylan xxx