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

Hi-ho, hi-ho...

it's off to Ohio we go!

We're leaving Sunday, hopefully coming back Friday. Honestly, I'm dreading this. A lot. Ugh.

I don't know how some families do it!

Catching up...

Here's the tooth that came out of the middle of nowhere! I still can't believe it... He's only 5 1/2 months old, and really is more like 4 1/2 months old since he was premature! The picture of Micah and Travis has to be one of my very favorites ever.

Here's some mommy wisdom I've learned. When I was pregnant, my hair grew and grew. It was thick and wonderful. Then... all out once, it made a mass exodus. It was like someone ran into a crowded theater and yelled, "FIRE!"... out it fell... in clumps, in heaps... Darn.
Another thing... Diaper changing stations in restaurants are NOT a given. We obviously spend a fair bit of time driving to and from Cincy with Micah. There's a great town about halfway to Cincy... We've stopped at 4 major chain restaurants... Only one had a changing table. People... really... do you want me to be changing his dirty diaper in the middle of your restaurant? You're not giving me much of a choice.

Micah is starting to take a spoon, which is super exciting. He really can't have anything more than a half drop of milk, but he likes it! This was a totally unexpected development, spurred on by the tooth I think. If by some miracle he passes his tests in March, we might be talking eating by mouth! (By some miracle being the important part). Anyways, I've been in touch with the miracle Man, anything can happen!

Anybody have any experience with the Indiana state parks? I'm looking for places we can take Micah this spring and summer. He can't hit the beach or the pool, so I'm looking for other options. Let me know if you have any recommendations, or would want to come with us! (We're thinking a day, maybe 2 at a time).

Micah's first tooth!

Micah got his first tooth this week! I never would have guessed he would have gotten a tooth so soon! He's such a big guy!

And tonight, for the first time, Grandma and Grandpa are going to babysit. We've given Micah his marching orders: Don't spit up, don't pull out anything, don't clog your trach off, etc. He's allowed to poop though... he can feel free to get it all out of his system by the time we get back. It's our first date in 3 months.. Yippee!

We can't wait until spring and we can go outside! Boo Winter!

Update from Brittany

Sorry that I’ve neglected the blog so long! (And thanks to my mom for keeping it up to date!) Micah has been keeping us very busy for the last few weeks! There’s so much going on, I’ll try to keep it short and sweet. He’s been spitting up a lot, and isn’t eating as much as he should be. He’s still growing, so we can hold out hope something will change and we won’t have to go back to surgery (the surgeon explained our options and they stink.)

Micah is 25” long and weighs 13 pounds, 12 oz which is hard to believe! He’s smiling a lot more (although hardly ever when people are trying to get him to smile, ornery pants!) He’s figured out that fingers are great to put in his mouth. It’s pretty amusing to see him… He’ll study his fingers very carefully, as if to say… hmm… which one do I want to munch on now? He likes to roll over, from his left to his right, but not the other way around. He sort of winds himself up and throws himself over. It’s quite the show. He’s learning to hold his head up when he’s on his stomach, but lets face it… he’s got a big head. J

We were down in Cincy in late January, and we are returning it looks like March 1st-5th. The hospital is great at condensing appointments into as short of time as possible. He has a MRI Monday, a meeting with his docs/ an appointment at the malformation clinic Tuesday, and a ML&B (airway scope) with some lasering of the mass in his airway. This is part one of trying to get the mass out of his airway. After that he will be in the hospital overnight. If that wasn’t enough, they’re trying to schedule an upper GI (check his belly), a FEES (check his aspiration and breathing), and a video swallow study (where they check to see if he’s swallowing liquid or aspirating). He’s had blood in his belly a few times in the last few weeks, so that’s been frustrating because we don’t know where it’s coming from. I keep thinking we’re going back to Cincy, but we haven’t had to go back yet. Let’s keep it that way.
If you’d pray that his feedings would improve, that would be fabulous. He’s only tolerating 2 ½ ounces (run over an hour) ever three hours, which is no good. He should be at least at 4 oz. He gets continuous feeds overnight which we’ve pushed as high as he can tolerate. Well, gotta run, he has to eat now. (Thanks for posting this, mom.)

(P.S. Sarah P. let me know if you get this… sorry I can’t get on facebook to reply to you. I’m glad the baby girl is doing better… How scary! Leave us a msg when they get her heart surgery scheduled. My mom has been reading the carepage to keep us updated on you guys!)

Update and pictures 01-20-10

First picture - Micah is hanging out with Uncle Greg.

Second picture - Playing with Grandma

Third picture - Rough life being fed while you sleep :)

They will take Micah to Cincy on March 1 for an MRI, March 2nd they will meet with the

Doctors from the Vascular Team to decide how the cystic will be removed. On the 4th, he will have the malformation in his throat lasered off. They hope to schedule his swallow test during that week. They will also, redo the Upper GI. Lutheran Hospital didn't do it right.

He has been having trouble with spitting up and they need to figure out what is causing it. They are thinking it's just reflux.

He has been busy with OT, and PT. He has each once a week for an hour. They hope to add Speech also.

I'll try and update more often. Brittany doesn't have Internet at home so she has a hard time getting it updated. Thanks for all your prayers.

Happy New Year!

Wow, it's 2010. Micah turned 4 months old on New Years Eve, and he's more active (and ornery) than ever! He's figured out how to pull hair, pull off my glasses and all sorts of silly things. He's getting stronger by the day and is able to hold his head up pretty steadily when he wants to.
All that said, we don't know what this year will bring... but do we ever really? We go back to Cincy Jan 19th for a meeting with the Hemangioma/Vascular Malformation team as well as an appt with his old (favorite) speech therapist. The team meeting will help us plan the next steps for removing Micah's mass. We are HOPING that they will take a more conservative approach in the next step of this process, but it all depends on the structure of his mass (which we will have to figure out by MRI eventually). We are praying that its macrocystic as opposed to microcystic. If it is macrocystic they may try injecting it with a scarring agent to try to close the pockets down. If it isn't, they'll have to surgically remove it. We're most concerned about the area on his face since every major nerve for the right side of his face runs through that area. They've currently only damaged one facial nerve and we'd like to keep it that way.

Our meeting with the speech therapist will help us decide whether to do another FEES (swallowing/aspirating check). His last one was at 3 weeks old, and we hope that it's time to do another one, and that he passes it this time. That would put us on the road to oral feedings, potentially! That would also be step 1 of 2 for getting his trach OUT!

It's going to be a busy year, I'm sure!