Consulting with the Docs

The meeting with the urologist on Monday was great. Nice guy, very knowledgeable, great bedside manner. He drew pictures of the procedure on large sheets of butcher paper taped to the wall, which was a little weird. I now have copies of penis drawings rolled up and stored in the rental car. I'm not quite sure what to do with this, save it for Alex's baby book? Awkward. 

Yesterday was a long, emotionally-charged day. 


We met with the speech pathologist first. She was fantastic and reassuring; she informed us that Alex was meeting all of his developmental milestones. She was confident that if Alex had the surgery now, his feeding would improve and his speech would not be impacted (noting that children with or without TR surgery may need to see a speech therapist during their early years - we will continue to consult with a speech pathologist until Alex is in elementary school). 
Feeling good, really good. Confident that I'm doing the right thing for my son and everything is going to turn out great.


We quickly grabbed lunch and made our way to Dr. Marsh's office. First we met with Kristen Burr, Dr. Marsh's assistant. She helped coordinate our visit and if you make the decision to consult with Dr. Marsh you will quickly learn to appreciate Kristen's responsiveness and organization! When Dr. Marsh entered the room, his first comment was, "I don't know that we will be able to perform surgery". I was devastated. We worked so hard to get to this point only to be told "no" so quickly? He was concerned about Alex's breathing. Our pediatrician calls Alex "snarky" - he always breathes in a raspy, congested manner. I just assumed this was normal for children with BWS.  Apparently this is not the case. Dr. Marsh was very concerned that Alex would end up needing a tracheotomy. Ugh! A trach!? The whole reason we were in St. Louis was to avoid getting a trach. After explaining Alex's history, Dr. Marsh agreed to have the ENT (our next appointment) determine whether or not Alex would be a safe candidate for surgery. 
Feeling like crap. I'm the worst mom EVER. We are going to return home with either no improvement in Alex's condition or he is going to be stuck in a St. Louis hospital for 6-8 weeks with a hole in his throat. 


The ENT scoped Alex's nose and throat and listed to his history. He said he felt comfortable allowing the surgery to continue as scheduled pending the results of a chest x-ray. 
Okay, good, because I wasn't going to allow Alex to have surgery without knowing we had done everything we could to make sure he would be safe during and after surgery.
We also found out that Alex is going to need to have his tonsils and adenoids removed when he's older. Awesome, yet another hospital visit to look forward to! Poor boy. 


We immediately went down to radiology and had the chest x-ray performed and were told to return home to wait for the results.  I called Dr. Marsh's office this morning and the x-rays looked good. We are scheduled for surgery tomorrow afternoon. 


I'm usually a very optimistic person... but now instead of feeling confident and ready to face this procedure, I'm terrified that something is going to go wrong.  I just keep reminding myself to be positive. I have to trust that we are doing what's best for Alex. He is strong and resilient and I can't wait to see him smile after surgery, knowing that the worst is behind us!