Monday, January 24, 2011

A boring medical update...

Well, Mortimer hasn't had any brilliant ideas for posts lately, so he asked me to write an update about all the medical stuff...I'll stick in some pictures to make it more interesting.

Timmy has been doing extremely well on his G-tube feeds. Right now, he's taking 21 ml an hour through his G-tube (yay!) and 1 ml/hr through his J. That means that at 6pm tonight, he'll be on full feeds through the G and we can clamp the J! The next step will be deciding what exactly to do about the J (how to get it out). During rounds this morning it seemed like there are a couple of different opinions on what the best next step is. Some seem to think that it won't be a problem to simply pull the J out and let it heal up on its own (that's what we'll eventually do when the G comes out). Others are of the opinion that he'll need another surgery to close up the hole where the J is. The surgery option is the assumption we've been operating under--at least several more weeks before the surgery and then a few more weeks in the hospital after that. But if it ends up being possible to pull the J without surgery, we could be home sooner!

Respiratory-wise, Timmy has been doing great! He's still on the mist collar, which no one predicted (he's breathing way better than the condition of his bronchi would indicate). My main concern if he does come home on mist collar is what happens when he gets a cold--I'd hate for a normal run-of-the-mill cold to land him back in the hospital. Timmy is scheduled for another scope Wednesday morning. We're hoping that the graft has healed completely--if so, we may start talking about a swallow study soon!

The other big news is that Timmy has been diagnosed with x-linked Opitz B/GGG syndrome. If you're interested, there's some good information here. The x-linked version is (of course) extremely rare, affecting 1 in 50,000-100,000 boys (lucky us!). The diagnosis doesn't change any of our plans for Timmy; it just gives us an explanation for everything.

T will be four months old on Saturday. He's 8lbs, 2oz. Since he's such a little guy, they're supplementing his milk with extra calories to help him grow.

We've been talking with his discharge coordinator about fun stuff like home medical equipment and home nursing. Even though we know it'll still be awhile, talking about things involving the word "home" is pretty nice!

We're starting to do tummy time a little more often (though once he switched over to mist collar we had to come up with a completely new system, since the trach was no longer protected by vent tubing). T does really well holding his head up! He also loves his swing, hates his baths (yup, he got another one!), and loves sitting up (if he's upset, 9 times out of 10, helping him sit up calms him right down). He charms his nurses' socks off!

1 comment:

  1. Thanks for the update. I wish I had the right words. Everything sounds encouraging- home, better than thought, might heal on its own. Saying many, many prayers as always for your family. I hope a transition home is soon in your future! And the drs will have wisdom when it comes to the next steps for Timmy. *hugs*