Tuesday, May 12, 2009

Surgery Update

Mikan loves playing in his Johnny Jump Up outside.

I wasn't left with warm fuzzies in my stomach after speaking to Mikan's ENT from Riley last night, despite his efforts to remain positive. He said that even if Mikan's airway issues are not caused by reflux (perhaps the movement of the trach itself causes the spread of unwanted tissue), the small chance that he may be able to avoid a major surgery is worth whatever halt in development he may receive by waiting a few months on the Prevacid. Ok, so we can wait.

But he also told us that there are 4 different stages to airway obstruction, and at a stage 3 or 4, laser surgery is usually not effective. In fact, doctors often don't even recommend it because the scar tissue from the surgery itself is just as bad, if not worse for the airway than whatever it was they were trying to remove. During Mikan's last scope a few weeks ago, he was between a stage 3 and 4. This is grounds for airway reconstruction where some cartilage from his ribs needs to be removed and put in his trachea. So...if Mikan downgrades to a stage 1 or 2 this summer, which is ideal, minimal removal will need to be done. If he remains the same or gets worse, then he will have to meet a new team of doctors for reconstruction.

His ENT wanted us to keep this as a possibility in the back of our minds because right now Mikan is a good candidate for reconstruction. To give you an idea of the seriousness of this surgery, the ENT said that about 75 kids get trached a year in Indiana, and of those 75, 6 need airway reconstruction. Right now I'm praying Mikan is not one of the 6, but we will welcome whatever struggles lie ahead for him and our family that we have no control of.

On a positive note, the ENT agreed that waiting till late July wasn't necessary, and he was going to "check his schedule" to see if we couldn't be moved up to the end of June.

And we are constantly reminded there are those who suffer in greater ways than us. Please pray for Kaleigh's family. She just recently went to Heaven.


Hope said...

These surgeries are serious, so I'm glad we're waiting and finding out everything that could be wrong with Ava now. I was told that airway reconstruction means long hospital stays, most of the time the kids are in ICU with breathing tubes until the swelling goes down.

I know how you feel. I'm sorry Mikan is having to fight so much. I'm praying!

Alexa said...

I love you guys. I'm so very proud to be Mikan's grandfather...


Jamie said...

just keep your eye on the prize...whether he needs the reconstruction or not he WILL be trach free sooner rather than later.

ANewKindOfPerfect said...

I hope that his airway goes up to a 2 or 1 this summer, so you can avoid the big reconstruction!

The picture of him in the jumper is CUTE!

Marissa said...

Sorry to hear about the possibility of reconstruction. I will pray it does not go that far.


awesome aunt annette said...

You three are amazing, I pray for you everyday!! I wish I could see you more often, give Mikan a big kiss from the 4 of us!!

I hope Mikan will be able to meet his new cousin soon!

Michelle and Sean said...

Well I'm praying for you all. I'm sorry that he might have to have this major surgery. But I'm glad that you might not have to wait till the end of July anymore.

I will pray hard for you guys.

I am also prayinf for cute Kayleighs family.