Note from Grandma

Micah's procedure went well. He was a little trooper. They are on their way home now. They are in Greenfield, which is halfway, and reports are that he is having a great trip home.

Thanks for your prayers!

Ugh!

Well, we thought we wouldn't have to be back in Cincinnati until June or July (whoa!) , but here we are. Micah's feeding tube (his g-button) started malfunctioning yesterday. The type of tube he has needs to be replaced at the hospital. The hospital in Ft. Wayne couldn't get the new button in until next week, so this was the place to go. Luckily they could get us in today! Now we will be getting the g-button we've wanted all along, one that can be replaced at home! :)
Micah did well on the trip down, but we're driving home tonight, so we could use some prayer!
Thanks!

Hit the road, Jack!

ENT has cleared us to go home, now just the inevitable two or three hours it takes to get around the paperwork and leave (why?)... Micah had a pretty good night. Once he had gotten up from surgery, he took at 4+ hour nap, so I was afraid he wouldn't sleep, but my fears were unfounded! They've kept him at a higher dose of tylenol than usual, but we'll go back to the normal dose once we're home. Let's not chance it on the way home, right?

Of course, I bugged Dr. Elluru about a Passey-Muir valve (PMV) again... I almost always do. They said they'd fit him with one next time we're down here. What a PMV does is it lets you breathe in through your trach, and it doesn't let you breathe out the trach. Instead, you push the air up through your trachea, out your nose and mouth (like a normal person). Unfortunately, it's a lot more work for some kids to do that, and some just can't use them. When they resolve the laryngomalacia, that will open up his epiglottis and let more air through. (Just in case you were wondering, I figure that we have to learn all this stuff, so I'll torture you too) :) Fixing the laryngomalacia could also create a lot more aspiration problems, because the epiglottis is part of what keeps what's in your mouth out of your lungs. Since it doesn't open much, not much can get by. Opening it could let more in if he hasn't figured out the whole "close it off when you swallow thing". (Don't quote me on all of this, I think I have it figured out but I'm not sure).

If if's and but's were candy and nuts...

It's good Dr. E is the king of "it's not the end of the world" and "it'll be alright" and my personal favorite, "we're still hoping to have him all packaged up by kindergarten, maybe PreK." Yay for great doctors!

He's out...

Micah is out and doing well. Mixed news, but mostly good.

They didn't need to do any lasering in his airway, which is super. Where they got last time looks really good. They did notice, however, that he has laryngomalacia. Essentially, his airway is narrowed near his epiglottis. They'll need to essentially trim some of that back (ouch) to open up his epiglottis. Problem is that when they do that, he may aspirate more if he doesn't have it under control. They're thinking there's a chance that his very narrow epiglottis is why he's not aspirating food and not needing suctioned too much. So unfortunately, we'll see what happens with that... Might be a step backwards.

They were able to do the sclerotherapy in his esophagus and on his face. Hopefully that'll keep the mass in his esophagus under control which might help his swallowing. They also did a small part up near his temple, essentially just to see how it goes. They can only use so much of the medicine at a time, so if it helps, they'll just do little bits at a time. Unfortunately it causes a lot of swelling, so by mouth feeds will be on hold for a few days to a week.

He's all settled in his room now (which is A3 North Room 3, not B5 like we were thinking) The plan is that if all goes well. There's internet access in his room, which will help kill the time.

I think that's it...

Back in surgery

He went back about 8:30 or so.. we got to talk to the surgeon and the interventional radiology (IR) doc before he went back, which was nice. Also got to see Micah's old surgeon for the first time since Micah left the NICU. That was great!
Micah should be out around 10:45. We'll try to get the blog updated tonight, whether it's me or mom.
They've got some grand plans today for surgery, but I'm not going to go into it all. A lot of it depends on how stuff goes, and the IR doc warned they may not be able to do all they are hoping. Plan is still to go home tomorrow.

For those who can visit, we'll very likely be on B5 tonight.. Complex Airway Unit.. there are only 10 or so beds, so come looking for us. If I can get a room number up later I will. Come see us!

Fun pictures...

Prunes are apparently not for the eating, they're for the wearing!
We are leaving Sunday for Cincy, will be back by Tuesday afternoon, hopefully. Pray all goes well.

(forgive the picture quality on all these, they're camera phone pics!)

Mmm mmm food!

Micah has been slowly but steadily eating over the last week! He doesn't take much (maybe only a teaspoon) but he's swallowing it! (It's in his belly afterwards!) So now, we're still doing marathon feedings so he doesn't puke- feed and hold time of an hour and a half every three hours, and trying to feed him by mouth 2-3 times a day. You can guess what else we do... not much!
We're so blessed though... he's happy and healthy and gaining weight. He hit the big 15 this week! 15# 3oz!