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!

Wahoo!

There was a chance this day wasn't going to come, ever... but today...

Micah ate some rice cereal!

He did really well with it. He didn't spit very much of it back out, and seemed to like it. YAY! Unfortunately, we tube fed him after that and he threw up essentially everything... So we're not sure what to make of that... We have video galore and pictures I'll have to post later (not of him puking, I promise!)

Finishing up...

Sorry it took so long to finish up.... But really, there's not too much more to say. The mass in his airway is going to be lasered out, step by step. Unfortunately, they found some mass that is on the back side of his esophagus, pushing on it. That may or may not be affecting his ability to swallow. We're waiting to figure out what they want to do with that (there's no protocol, uh oh...) to schedule his next trip down. Ideally, they're looking at early April, but that doesn't seem like it's going to happen.
The great news is that his dye tests have gone well so far. Once (or if, I suppose) he passes 7 days, we can start with rice cereal!!! He's passed 5 so far... Oh, the anticipation is killing me! Who would have thought we would have had this much turn around so fast. Of course, all our progress could be taken away at any time, but we're trying not to think of it that way.

Here's some of the fun we had in the last few weeks...Here's our germ-o-phobic travel around the hospital. A family with a baby even younger than Micah saw us and commented "Now they know how to do the hospital!" They asked if we had a spare with us :) Unfortunately, we didn't.

So this is Micah chilling at the Ronald McDonald house. He was getting changed, I promise I know how to put a diaper on a child. We decided we should probably slap the diaper back on before taking the video. And for any of you trach mama's (or Cincy friends) out there, we were doing his care around his trach, I promise he wears his HME all the time otherwise.

We bought Micah a smaller stroller, but he's not big enough for it yet. Apparently, it was a terrifying experience. Here's proof.It probably makes me an awful mother, but I was laughing hysterically when it happened. And I'm still laughing. Oh, what a funny kid. If that isn't terror....

And last but not least.... Super Micah! If you need a laugh, here you are.

GOOD news!

We got some really good news and some pretty decent news. The really good news is that he has hearing in his RIGHT (the bad one) ear! They cleaned out all the gunk, and put tubes in both his ears, and they found out that he only has mild hearing loss in his right ear! That's awesome, because the previous two tests showed he had no hearing in that ear. The hearing in his other ear tested in the normal range, which is great. The audiologist said at this age, good hearing in one ear is enough for speech and language development. Praise the Lord!

The lasering in his airway went well. They took out a section of malformation that was pushing on his epiglottis and are discussing on the next step they will take.




Brittany ran out of time to finish updating this, she will finish next week when she gets a time. Thanks everyone for all your prayers this week. Grandma Brenda

Took him back...

They took him back at 12:05. The whole thing is supposed to last an hour and a half, 45 minutes of the surgery, and 45 minutes of audiology. The doctor also decided he's going to put tubes in his ears if he needs it. Might as well get it done if he needs it!
Someone will post when we know more.

Today, play day...

We're trying to relax today, but Micah isn't having much of it. He's been a grump all morning, but he hasn't realized it's play day! Tomorrow, he has the scope and laser therapy. All in all, I don't think it'll take much more than an hour. They also squeezed in audiology to check out his right ear, and someone form interventional radiology to check out his mass via an ultrasound. Luckily, they do a great job of shoving a lot into a short amount of time.
I'm off to meet a mom with a 3 year old boy that has a trach. There's a great trach website, and lots of the kids go to Cincinnati for treatment, and this little guy happens to be here this week too.
His procedure is at 11:30 Thursday, and he will be in the hospital for observation overnight. Then, ideally, we'll be on the way home!

I was really hoping...

The MRI showed that the mass is the micro (small) cysts mostly, which they can't do the injections on. There may be a few pockets, but the Dr needs to check it out more clearly on Thursday. (An ultrasound on it, apparently can give them info they couldn't get on an MRI. Strange.)
His ENT doctor said we need to do about a weeks worth of at home aspirations test (simple, really...put green food coloring in his mouth and see if you suck it out of his lungs). IF, if, if if he passes that, we can start pushing his feedings up, AND start to give him little bits of food BY MOUTH. We're not sure he will do anything with it, since he's never swallowed anything (on their camera) but at least we can try if he passes this test. By mouth.... The words "by mouth" have never not been preceded by "nothing", ever (did you follow that?) That's pretty exciting.

He also had an upper GI done today, which of course looked normal. But he's still puking. Everything looks intact, but they weren't able to get him to swallow any barium (who can blame him) to see what his esophagus was doing. So who knows there. The docs don't, so I'm not even going to try.

The gameplan is to continue to work at getting the malformation out of his airway (a multi step process) and to get the trach out in the next few years. There's an experimental drug they are considering for getting rid of the mass, but it seems to be a immune suppressing medicine used for Hodgkin's disease. Not a super option. They also can do surgery, but frankly, they don't want to. It's going to have to wait.

And we're going to have to wait. And I'm not good at waiting.

Cincinnati, Round 5

Day 2: The results show: Well, the plans, they are a changin'. His FEES (aspiration test) went... Okay. He's showing some improvement in that he's not aspirating on his secretions, it seems. They gave him some volume of green dyed milk (it was only about 2 mLs, but that's the most he's ever had!) and it didn't end up in his lungs, YAY! He did not, however, show a swallow. That's the silly part, because we know he has to swallow, he doesn't have any drool or bubbles while he sleeps. He CAN do it, for some reason he just doesn't. When the doctor looked in his airway he called it crowded, which is probably fair with the malformation that is in there. There seems to be some damage to some of the structures on the right side, but to what extent it's impossible to know from that test. He's going to have us do some at home tests to hopefully prove he's not aspirating on his saliva. So, all in all, mixed. We had a video swallow study planned for Wednesday but the doc rightfully cancelled it, Micah can't handle enough contrast dye to make that study work.

His MRI proved to be a little different than planned. We thought it was going to be under sedation, but it was anesthesia instead. We got there at 2, he went back to the MRI room at 3:30, and didnt get out until just before 6. That was a LOT longer than we planned. He handled the anesthesia like a pro (he always has). The nurse said when she picked him up and put him on the bed in the recovery room, he popped his eyes wide open and was ticked off. (No milk since 8, no pedialyte since noon... I'd be ticked too!)

Preview for tomorrow: He has an upper GI, to hopefully find out what on earth is going on in that tummy of his. We also have a meeting to hear about what the doc found on the MRI, his plans for getting rid of the mass inside his airway Thursday, and his ultimate plans to get rid of the mass on the outside in the future.

Long day today, not quite as long tomorrow.

Day 2: Tests: The FEES and MRI. We will know the results of the FEES as it happens. Last time he had this test, he was about 3 weeks old. He failed it miserably.... We are hoping to see at least a little improvement. The test itself is only a few minutes, but the process can take much longer. The MRI will be about an hour, but he has to have sedation :( so it'll take all afternoon. We won't know anything until tomorrow.

Day 1 went well. We got moved in to our (not suprisingly) nice room at the. Ronald McDonald house. It's kind of fun, because the person we got to know best that was staying here is also here now! Micah didn't sleep too well last night, but maybe that'll mean he will take good naps today.... One can hope