Tuesday, May 12, 2009
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.
Posted by John and Jenna Gensic at 5:05 PM