Surgery postponed

We got a phone call from the ENT's office today canceling Luke's surgery tomorrow. As you can imagine, Rob and I are very disappointed. Luke has already had to wait 2 and half months more than he should have and now this. We haven't gotten a new date yet, but it looks like 2 or 3 weeks from now is the best we can hope for. I think they wanted to put us back at the end of the line - the end of February - but hopefully we can get them to fit Luke in instead. This is all so incredibly frustrating. Luke having his nose repaired is the first step in a long line of things we need to do to get his trach out, and hopefully get his ears cleared up. I am trying not to pin all my hopes on what things will be like "one day" after Luke's trach comes out, but it truly feels like all our lives will be so much better when we don't have to be so focused on every breath Luke takes. I already feel like we have given up so much of Luke's life to this waiting. It is so hard knowing what your child needs and feeling like you are completely powerless to make it happen. We will let you all know when we have a new date.

Updates since last Carepage post

Just to bring everyone up-to-date, we have had good news since our last post in October on Luke's Carepage. A CT scan of Luke's head was "encouraging" according to Dr. Hill, Luke's ENT. Dr. Hill is going to try to repair Luke's choanal atresia (the bony blockage in Luke's nose) by going through Luke's nose rather than his palate. The surgery is scheduled for this Friday, December 28th. This would be an easier surgery and recovery for Luke with less side effects, but even if Dr. Hill has to go through the palate instead, Luke's nose should finally be opened this time. This will be Luke's fourth time going in for the CA repair, so we are more than ready for this to finally happen. Luke will have stents (plastic straws) in his nose for a month or two after the surgery to keep his nose open and prevent it from scarring closed again. Once his nose is open and stable (fully healed), then we will work on getting the trach out. As far as we know that only reason he needs it is because of the CA, but he has had it so long that getting him to use his nose and mouth will probably take some time.
Another thing we learned from the CT scan is that Luke's ear structures appear normal. He has semicircular canals, which affect balance and are often absent in children with CHARGE, and he has the normal number of turns to his cochlea. Rob and I were shocked by this, because we thought we might see defects to account for Luke's hearing loss. He has had 3 ABR's that showed no brain response to sound. Earlier this month Luke had a booth hearing test and the results were much better than we had hoped. We didn't get any information about his hearing unaided. But with a bone conduction hearing aid Luke's responses were in the upper end of the normal range of all the frequencies except the highest pitches. This should mean that with a bone conduction aid Luke could hear most of the sounds of speech, except for high, soft sounds like "s", "f", "sh", etc. And when/if the fluid in Luke's ears clears up he may be able to get regular hearing aids that could put even those soft sounds within his hearing range. We were able to borrow a bone conduction aid from the HEAR center at Children's and we have been trying to get Luke used to it. So far he has not been crazy about hearing and/or wearing the metal headband hearing aid. During the surgery on Friday Luke is having another ABR, but this time with a bone conduction aid. Hopefully the results will be as good or better than we got in the booth. If Luke can hear speech well with an aid then he won't need cochlear implants.