Sunday, May 31, 2009

Mmm...Rocky Road

We've decided that if Mikan needs airway reconstruction, we are going to take him Cincinnati Children's Hospital. They have a worldwide reputation for treating airway obstructions, and they perform 150 reconstructions a year. Riley does 3. We are just beginning the process of preparing for this transfer should Mikan need it. We pray he won't need it; however, we want to be prepared by the end of June if he does. We have also heard horror stories about children who have had several laser surgeries only to keep regrowing the same scar tissue. If Mikan has a significant amount of obstruction, I think the recommendation will be to skip the surgery in June and plan for reconstruction. I'll just be praying for a miracle vanishing of all scar tissue while we wait for the end of June.

Mikan enjoyed his visit to Albion/Ft. Wayne yesterday. In the video below, he "explores" remnants of my rocky road ice cream while practicing his sign language.

video

5 comments:

Alicia said...

That video is awesome. I saw the "more" sign. WTG Mikan! And the look on his face when he finally looks up, too cute! It's like he's saying "oops, busted!"

I think moving his care and reconstruction to Cinci Children's is the right decision. We all know what that team's reputation is with airway kids, plus they are so much more experienced. I'm still praying he won't need it though.

DevonLeah said...

He is so cute!

Prayers for that miracle to happen- for no surgery.
How do you sleep without night nurses? I guess in time I will feel more comfortable? We've only been home 3.5 weeks and he still has to be watched all the time. Plus the fresh milk put in for his cont. feeds. I am actually thinking of cutting day nurses back to three times a day starting in July, and just having night nurses to keep an eye on him.

I am so glad Mikan is doing so good!! I am so happy for ya'll!!

Michelle and Sean said...

Oh I hope everything works out! We are praying for you all.

I couldn't help but smile and get really excited watching him sign. That was seriously awesome. I can't wait for Maggie to start signing. Yay Mikan!!!

Hope said...

I'm praying he won't need it too! But if he does, I think you've made the best decision. They are thorough. Just be prepared to spend a week in Cincinnati beforehand for nothing but tests and appts with the entire team, they don't take other hospitals' tests. The aero team does a ton of tests, then they all meet at a roundtable discussion (on Wednesdays) and go over everything together. They agree on a treatment plan with all involved, including feeding team. There are so many people involved, it's incredible. They will take amazing care of Mikan.

WTG Mikan for signing more!!

ANewKindOfPerfect said...

Look at him go! LOL Adorable. :)