Luke's surgery

I just wanted to let you all know that Luke is home and everything went well today. Dr. Hill decided he didn't need to remove Luke's adenoids right now, so he took out the stints. Yeah!!!! It is already so nice not to wipe every few minutes and to see Luke's cute little nose again. Better news still is that Dr. Hill has opened up Luke's nose as much as he thinks he needs to right now. He wants to have a look again in 6 weeks and see if the openings have healed and if they are still where they need to be or if they have narrowed from scar tissue. If the choanae have closed at all then he will dilate again and check Luke's nose in another 4-6 weeks. If Luke's nose has stayed open and healed then he won't need any more surgeries for a while and we can figure out what needs to be done to ween Luke off the trach. I think Luke will probably have to have a few more dilations, but it is wonderful to know that Dr. Hill has been able to get to a stopping point and it is just a matter of holding ground. If the best were to happen in 6 weeks it will still probably take a while to get Luke decannulated. Basically he has to breathe with his trach capped and training him to do that for longer and longer periods could be a slow process. Rob and I are both just so happy that we are moving in the right direction!

Luke's hearing test went well yesterday. They tested with his bone conduction aid and he was able to turn to show that he had heard noises. We don't think he turned toward everything he heard, because he is just not there developmentally. He mostly likely only responded to noises that interested him. Luke will get booth tests done every 3 months for the next few years to try and get an accurate picture of what he is hearing and if his hearing is fluctuating or improving. Our next step now is to buy Luke an aid. While the BAHA (Bone Anchored Hearing Aid) would be nice because it comes on an elastic band that is easier to keep on, we will probably end up going with the regular bone conduction hearing aid like the one he is currently borrowing. Since we don't really know how Luke's hearing will change in the next year or two it is best to give him what he needs now, but not make a huge investment for the future yet. Luke might still move to a conventional BTE (behind the ear) hearing aid later on when his ears stop draining. If we stick with bone conduction, we can always purchase a BAHA a little later. The main difference for us is the band. I finally got a good look at the BAHA yesterday and think I could make a similar band for the aid we are buying without too much difficulty.