Update on Ezra

Ezra had his p-flap surgery on December 28.  Boy, that was a tough one.  I would call the surgery/recovery something akin to combining a tonsillectomy and a palate repair.  They have to detach a large patch of skin from the back of the throat, reopen the palate, insert the flap of skin and sew it all back up.  So, you have pain from the throat and the palate.  And he is 3.5 years old now instead of a 19 month old toddler.  The older they are, the harder things like this are :(

We had surgery on Friday and were discharged on late Sunday evening.  I had not slept since the Wednesday prior and Mike had slept in a fold out hospital chair/bed.  We were exhausted!

I would say the hardest thing though was the recovery. Ezra was in a great deal of pain and refused to take anything by mouth.  He lost 3 lbs the first week after surgery.  Everyone kept throwing out suggestions of what to feed him.  Having something he was allowed to eat was not the issue.  Having something he was willing to eat was the problem.  He refused ice cream, popsicles, frozen juice, and every.thing.else we offered.  I was seriously afraid we would end up back in the hospital with a dehydrated boy.

We ended up borrowing a baby bullet from a friend and that was the trick.  As long as I could liquify whatever the rest of us were eating, he would "eat."  It was gross, and I certainly wouldn't have allowed a bit of it to touch my lips, but Ezra loved it and he started eating.  I pureed everything from a hamburger to Chef Boyardee raviolis!  The great news, at our follow up this week, he was actually up a pound from his pre-surgery weight!

At our first post op appointment the doctor noted that the palate was opening up a bit.  He said that as long as it did not open up more, we would be fine.  Great.  But the not great part was that every single day we looked in his mouth we could see his palate opening up more and more and more.  We had a second follow up visit this week and not only has his palate opened up a great deal, the flap has detached and is just sitting at the back of his throat in a little ball.  Basically, the surgery failed.  Everything the doctor built has fallen apart.

The doctor is frustrated.  We are frustrated.  The surgery was very painful, the 4 weeks of liquid diet were very painful and frustrating.  And now we most likely have to do it all over again in a few months.

As of right now, we will repeat the pharyngeal scope on March 13 and then follow up with the doctor two weeks later.  The doctor said that *sometimes* even if the flap fails, the throat will tighten up and create the same effect that the flap was supposed to: decrease the size of the space between the throat and the nasal area and partially block the airflow in that region.  *Sometimes*.  We will see.