Wow, where do I begin...I hate this post...Wes journey seems to get more complicated with each turn. I have told this story many times, as most people think we are in Chicago.
We are suppose to fly out Monday at noon, now we wait. Got a call late Thursday night saying local ENT would not give clearance. When Wes had his tubes replaced, he stopped breathing and the anesthesiologist started an IV preparing to intubate him. He did start breathing on his own and did not need intubation. She is very concerned about Wes airway, especially with the added stress of this extensive surgery and the scans prior.
Now Wes must have a sleep study and broncoscopy before the ENT in Chicago will give clearance. These test will take time to schedule. Actually a sleep study was suppose to be order in Oct when Wes was transferred to Shands. Local ENT thought this occurred and that was how Wes was release without the trach. The ENT at Shands just release Wes with the apnea monitor, which by the time he was transferred his breathing had improved. Chicago ENT is not saying 100% that Wes will need a trach, but based on what he has been told he can not rule it out or proceed with the surgery. Until his airway is secure the neurosurgeon feels the risks and dangers are too great. She called Friday and I have been completely in shock since that call. I just can not believe this is happening. It took us two months to get this surgery scheduled. I just can not imagine waiting that long again. I was so prepared and felt at peace.
I will update a new date as soon as I know.