Wednesday, June 23, 2010

He's out

Micah's out and he's doing fine. He's been pretty unhappy, but he's asleep now.

Dr. E went first in surgery. They were planning a scope and trimming his epiglottis. They got in and found out that the mass had expanded a lot and was displacing his upper airway. (The rapid expansion of the mass is likely because of the cold he had a few weeks ago.. and this is how it may always be.) The malformation distorted the upper airway anatomy and they decided it wasn't a good time to work on his epiglottis. That part went pretty quickly. Unfortunately the mass expanded a LOT and is really affecting the floor of his mouth now. It's pushing his tongue up. All along we were hoping he was just learning how to use his tongue and that's why it seemed to be moving more. He came out and told us what was happening while Dr. P got started. Dr. P was unable to do any sclerotherapy in the area of his temple and behind his ear. The tissue is too dense... the first time we've heard that. He was able to drain and inject some areas under his chin, which is the most important place. He is hoping for significant results, including the floor of his mouth. They also told us the area of his esophagus responded very well to the sclero last time, they didn't need to do any more work. They did as much as they could, and are going to try steroids to see if that'll reduce the swelling and help his airway get closer to normal. Eventually the plan is to get his tonsils out, just because they're in the way.
Unfortunately, with sclero not working in about 2/3 of his mass, surgery is our only option. The original hope was to wait to age 2, but now the plan is 1 1/2 because it might not be able to wait. Dr. E said it'll likely be a 6-7 hour major surgery. Ugh. They want his nerves to develop as much as possible before going ahead with surgery.
Of course, I (Brittany) am bummed. It's mostly not good news... as Dr. E put it, this is a really hard problem to treat. He's still hopeful to be trach free by age 5-6. I made Dr. E sad, because he's not used to me getting that frustrated. We'll just keep plugging away... They want us back for a clinic visit in a month, and to return for more sclero in a 'few' months.
Even though they didn't do much, we're staying in the night and will most likely get discharged in the AM.
Thanks for your prayers.

Tuesday, June 22, 2010

Some great zoo pics!

Luckily, the Peterson's took some great pictures for us.... Here's a few.
When we put Ella and Micah near each other, Micah kept trying to grab Ella's face, hair, etc. Hence Ella's "good grief, get me out of here" look, and Micah's austin powers, mwahaha look. They kissed and made up though. Ella likes to give kisses!

The zoo... duh!

I can't believe it. I thought I forgot my camera to the zoo... but I had it with me all along! UGH! I got some great pictures on my cell phone, and the Peterson's got some with their camera, so I'll post them later. We had a really nice time, it was good for Micah and Ella to finally meet! (They've been "friends" since Ella was born 8 days after Micah.) It's a nice zoo! Aside from a little bit of rain, it was great.

Micah's Dr. appt went well. Our doctor is so easy to get along with, and I know I take it for granted! He keeps joking he will watch Micah some night so we can get out (he's married with two daughters). He told Micah he'd take him swimming (up to his neck, of course). He asked Micah if he minded playing with barbies. Anyways, our doctor is just too fun... We got all our questions answered, and it's a go for tomorrow. Most of the procedure is "we'll see" but Dr. E is hoping that the 'sclero' will help a lot more this time... although he was really bummed to see how it's grown in the last two months. They're going to trim his epiglottis (his is really floppy, almost so much that it's shut) He's going to be really conservative because he can always go back and do more. This is the part of the procedure that I worry most about, because Micah will have to work more to protect his airway, but it's necessary to get the trach out. Kind of a catch 22... Can't take the trach out without it, but if he can't recover, the trach won't come out. Ick.

Anyways, surgery is scheduled (key word) for tomorrow at 9:30 am.

Monday, June 21, 2010

A wonderful wedding...

Happy Fathers Day!

(And Micah got his thumb in his mouth for the first time... what a strange thing, I know.. but in my head i'm yelling "Allison, Erin, check this out!)

Tuesday, June 15, 2010

Thursday, June 10, 2010

Looking forward!

We are looking forward to Eric's wedding on Sunday, and our visit with the Peterson's at the Cincinnati zoo that week! Not so looking forward to the doctors visits/procedure, but you win some, you lose some!

Micah and I had a great time putzing (is that a word?) around town on Tuesday. It was nice to see so many people we don't normally get to go see.

If you'd pray for us as we await the insurance letter about our appeal. I know worrying does nothing, but it's hard not too.

And, right now we're headed out to the park to enjoy the lovely day with Micah's (2nd) cousin Abram! Yay!

Saturday, June 5, 2010

Some pics :)

Phew, I'm never anywhere long enough with a computer to get anything up! Here's a pic of Micah's first outing in the swing in the front yard. He actually did really well with it... He definitely has room for improvement. He's doing really well overall...
We're going to my cousin's wedding June 20th in Anderson, then to Cincy the next day... to the zoo! He's got an appt the 22nd, and his procedures the 23rd, going home the 24th.