Don't worry, it's not slowing him down (at all)

Super fun time with super fun daddy :)

This pretty well sums it up! And... he's off!!!

Wow, Mom, your ear sure is interesting!

Two steps back?

Rough morning. Lately he's had issues keeping his first feeding of the morning down. It could be any number of issues, although probably nothing alarming. We're tweaking one thing at a time trying to figure out the problem.
Until... this morning I get a text from the nurse (it was my errand morning) that there's milk coming out of his trach.
WHAT!?!?!
A basic anatomy lesson... food goes down (and up) your esophagus, not your trachea. He aspirated everything as a baby, but has been cleared for everything for a long time. No signs of aspiration since he was an infant. Milk coming out of his trach... Dang. Of course I wasn't here to see it, but I have to trust she was right.
The conservative approach would say "do a swallow study, don't give him anything by mouth until we know what's going on" . The opposite would be to say (not that one is better than the other) "given his history of not aspirating in a long time, we'll call it a fluke and go back to what you were doing."
So, I think we're going to try to keep the puking to the minimum by slowing down feedings and watch any by mouth feedings carefully. He's not been doing well with them anyway since surgery. He's holding food in his mouth, which can be a sign of other problems.
Hopefully this random aspiration is a fluke. I'm concerned it was enough to actually cough out of his trach.... Not just a little suctioned out of his trach.
(Didn't I just say I thought things were going to slow down? I REALLY need to stop saying things like that!)

Well, the drain is out... at least?!

Well, the drain wasn't work, and we haven't been able to drain anything from around the drain, so doc asked if Travis would feel comfortable taking the drain out!
I'm starting to wonder if Travis has a second career coming! Mind you, this drain is supposed to be stitched in. Luckily, as we played with a little, we found out it wasn't stitched in anymore, and out it pulled! It came out really easy. He's only gone something like 3 days without a drain in the last 7 weeks! Once the site closes, the kid can finally take a decent bath and get a haircut!!! (And boy, let me tell you he needs both!)
He's still pretty swollen around his eye. Hoping a good long course of advil will take it down (it doesn't seem to be cystic swelling, really).
Looks like we may not have to be down in Cincy in the next week! It's been 4 days and we haven't even had the conversation about returning, whoa!!!

Not much to update...

We're thankful Micah's leg has gotten back to normal without any intervention. I couldn't even imagine if it were broken or something... He'd be so ticked!!!
No luck getting Micah's swelling under control. We're trying a regimen of advil to bring down the "inflammation" type swelling. We've tried to drain it around the drain, but still no luck even after the doc working on it Thursday. Sad day. As the day progresses he can see out of his eye somewhat, but not usually until the afternoon. Doc wants to watch and wait for awhile, since we've been intervening so much in the last few weeks. I understand, but it's hard. Maybe, though, that buys us two or three weeks from traveling though, which would be a nice change of pace.
I can't remember if I put this last time, but I've requested some time off until the next round of surgery/procedures. Maybe at least a month when this gets sorted out. It's cold and flu season now, which isn't a great time to be out. Don't want to wait too long though, since the weather will turn south in December, probably.

Oh... What to do... what to do...

I've really had enough.

It gets really frustrating when you just don't know what to do next. Yesterday the Dr. drained tons of (mostly) blood and lymphatic fluid, we'd been just getting lymphatic fluid at home, so he must have gotten a new pocket we hadn't gotten in to. Still no functioning drain, so he's just as swollen as he was yesterday. I thought I understood his philosophy on all this, but the drain AINT working.

The poor kid hasn't been able to see conistently out of his eye for the last week.

Things are just really stressful around here. We don't know what to do to get this all under control. The poor kid... He's been on antibiotics for 6 weeks now. That can't be good for his belly (or for anything). We're doing probiotics, because I have to feel like I'm doing something good for him.

He didnt seem to tolerate the rapamycin again... Even after being off it for about 28 hours, it was still in his system higher than it should have been. I think the consensus is we're at the end of that road.

We've seriously thought about just taking a week and living in Cincinnati and doing whatever it takes to get this figured out... Problem is I don't think that'd even help, because there's nothing new left to do.

This disease is far uglier than I ever imagined. And if you know Micah you'll find it no surprise he's over in the next room playing. His face is swollen like a balloon, he can't see out of one eye, he's puking just about daily, but he's playing. I wish I had his spirit.

Oh, hospital, how I've not missed you in the last week and a half. Got in late (no room in the inn), finally got infusion going at 4. Should be done and hopefully out by 7:30 at the latest. Hopefully be home by 11:30. Micah was a little trooper through two sticks... Poor kid is just hard sometimes. Did call child life (Tracy Lamar would be proud) for some back up, since I can't take more than one stick!

Still waiting on seeing Dr. Elluru. That ain't gonna be pretty. At least the tylenol is in his system (and the benadryl won't hurt either) :)

A hole in the head, a bum leg and a spent immune system.

FW Doc tomorrow to hopefully fix the drain-o. Cincy Thursday to fix the immune system.

Still having leg issues. Might be slightly improved today, hard to say. Ped will yay or nay the x-ray in the AM.