ENT & Dentist Appointment

On Tuesday we brought Luke back to the ENT doctor for a long overdue follow-up. ENT has always been Luke's most primary specialty doctor. He follows Luke's Trach, Choanal Atresia and all the other airway issues he has or previously had (laryngomalacia, glottic stenosis). When it comes time for Luke to get his trach out, he'll be the main guy in charge of it all. Dr. Sidman is one of the top ENT doctors in the country so I feel like we're in pretty good hands even though I don't always agree with everything he says. He always clearly has the best interest of Luke in mind when we see him. As far as getting the trach out, he said, "We're a little ways off yet, but we're getting there." Which to me is a positive, but realistic answer. The next step will be to have surgery on Luke's saliva glands (remove two and tie-off two) to reduce his secretions. We're hoping this will greatly benefit Luke, not only to help the drooling problem, but to improve his lungs by reducing the amount that can be aspirated into his lungs (yes, he does aspirate), therefore improving overall status of his airway. We had hoped that by going to Vital Stim therapy over the summer, it would improve his swallowing enough that he wouldn't need this surgery. We did see very subtle improvements with it, but I've come to the conclusion, that he should still have the surgery. We can always give the Vital Stim a try again later, and then he'll just have that less secretions to handle, hopefully making swallowing easier. Does any of this make sense? I could go on and on, but I think I'll just leave it there so I don't make everything too confusing. It even took us a long time to understand the correlation between everything. So... I now have to decide if we want to schedule this surgery for the end of the month or wait until January after all the holidays have passed. We will be looking at a 3-4 day hospital recovery time. With the busy season approaching (Halloween, deer hunting, birthdays, Thanksgiving, Christmas)... and the flu season that seems to hit hard soon after all that... it's really hard to decide what to do.

Then... the dentist. The name of the clinic is Dentistry for Children. This was officially Luke's first dental visit. The dentist he saw specializes in working with kids w/special needs so that was great because she's seen many kids who are g-tube fed as well as one other child with CHARGE. She was very good and gave Luke a good bill of dental health. No cavities. Although he has two teeth in the front that have some "enamel hypoplasia". Basically, the enamel is bad and causes a yellowish color to those two teeth. Could have been caused by medications he had as a baby before his teeth were completely fomed. Hopefully his permanent teeth will be OK. Also, due to all the grinding he does, he had worn down part of his tooth making it sharp (he's already bit his tongue a couple of times), so she was able to file and smooth it a little so it's not as sharp. He got very scared when she did this so we had to stop. Poor little guy didn't understand what was going on. She said she'd try to do a little more next time.

All in all, it was a productive trip to the cities, unlike other times when I wonder why we even went. Luke was a perfect little traveler the entire day. He's such a good boy!