One Step Forward. Two Steps Back.

Avery had another dilation last Thursday, his 10th for those of you trying to keep track. This was the worst recovery we've had from one since the perforation. The only reassurance I had that something wasn't really wrong was that we did a swallow study right after the procedure to be sure there were no leaks, and it looked fine. He was just extra groggy, confused, upset coming off of the anesthesia, and it was hard to comfort him. He also had a hard time even swallowing things like his milkshake and applesauce later the same day and difficulty sleeping because his saliva was pooling in his throat and waking him up. 

This is the 3rd dilation our GI doctor has done here in Pensacola, and since Avery is not showing any improvement (and actually seems worse than before), he wants to refer us on to the surgeon here in town for a different type of dilation. This is a new surgeon to the area, as our previous one left several months ago, and he has never seen Avery. Naturally, I am hesitant to let another "new" doctor do a type of dilation that we've had a very bad experience with in the past (a more rigid type of dilator, not the balloon that GI has been using). 

We decided that we aren't doing anything further until we've consulted with Dr. Paidas, Avery's surgeon in Tampa who did his initial repair and the 6 dilations after his perforation. So we've sent out our SOS, so to speak, and I hope to hear back from him soon about what direction to go from here. We are preparing ourselves for having to go back and forth to Tampa for further tx. Although the 7hr drive each way will be very rough, in many ways, it will be like coming home to have our favorite surgeon and anesthesiologist working together again in the hospital we're familiar with to help Avery. 

Stay tuned for further updates. On a happier note, we are excited to be traveling back to Louisville this week for my cousin's wedding and Claire's first birthday party- a welcome distraction from the never ending doctors appointments and stress of big decisions to be made. Thank you for all of the thoughts and prayers. We greatly appreciate it, and we take comfort in knowing that God knows best what Avery needs right now....praying He'll lead us and our doctors in the direction we need to go.

Post dilation...still wants to be Mommy's baby, sometimes. :)