Tonsilectomy/sleep apnea/swallowing

I haven't had a chance to update in a few weeks, but boy have we been busy. Today Connor is in surgery to remove his tonsils, do a scope of his vocal cord area and take washings of the lungs to send for a biopsy to see what he is aspirating. After the initial sleep study we saw our ENT who advised that the report showed Connor has Central Sleep Apnea which means that his brain is not signalling to his body to breath at times when he is sleeping and only one episode of Obstructive Sleep Apnea which was not considered abnormal so he recommended leaving the tonsils alone and would proceed with the scope and lung biopsy to see if anything could be done for Connor's aspiration of liquids. We were referred to a Sleep Specialist to determine if Connor should be on oxygen while sleeping for the Central Sleep Apnea.

I was lucky to get him an appointment with a Sleep Specialist at Children's hopsital the following week. As soon as the doctor reviewed the results of the sleep study and looked at Connor's tonsils, he recommended removing Connor's tonsils and going for a follow up sleep study 6 weeks after surgery. He said that even though the Obstructive Sleep Apnea did not show up during the sleep study, he still believed that Connor did have it and wanted to remove his gigantic tonsils. We are hoping that removing the tonsils will help with the swallowing problems as well.

In 6 weeks Connor will go for a follow up sleep study and they are hoping to see all sleep apnea resolved, but if he does still have episodes of Central Sleep Apnea, he will have to go for even more testing. They beleive that it is possible that Connor has a Chiari Malformation which is a problem with the brain stem that affects sleep and swallowing. I guess there is nothing we can do except wait and see and today we will focus on his surgery and recovery. He will have to go for a sedated MRI to check for this.

We have been told to expect a long 14 day recovery and I have heard some terrible stories about recovery so we are praying it is easy for Connor. Will keep you updated!

Here is Connor in the waiting room this morning prior to surgery

Swallow/Sleep Update

On Monday Connor went back to his ENT for his sleep study results and to check on his ear tubes. Once again we got no answers and left with more questions!  We did learn that Connor does not need to have his tonsils out at this time because he does not have Obstructive Sleep Apnea which is good news.  It was thought that he would definitely have Obstructive Sleep Apnea because of his extremely large tonsils. If this sleep apnea was found they were going to remove his tonsils and hope that would help his silent aspiration when drinking thin liquids as well. We did learn, however, that Connor has Central Sleep Apnea. This means that his brain is not telling his body to breathe at times during sleep. The report shows that he stopped breathing 18 times during the night for an average of 10 seconds and his oxygen levels dropped to 87%. The only thing the doctor said about this was that he probably should be on oxygen while sleeping to prevent dropping to dangerous levels, but we should see either a Pulmonologist or a doctor from the Sleep Lab.

So, the next step to resolve the silent aspiration problem is to have Connor go in for a Laryngoscopy which is exploratory surgery to look at the back of his throat and larynx and to biopsy the lungs. They did a basic version of this last time we were in the office, but they want to do it under anesthesia so they can go further in and see things more closely. If they do not find any structural damage causing the silent aspiration during this test then we will be referred for feeding and swallowing therapy to hopefully teach Connor the proper way to drink and the hope is he would eventually outgrow it. If they find food or something else in the lungs then we will be referred to other doctors. So, back to the waiting game.

I have done a lot of research on the Central Sleep Apnea the last few days since the ENT did not give us much info on it. It appears to be very rare in children. The Sleep Study was done at Tufts Medical Center since that is wear his ENT is located, but I decided that I would rather take him to Children's Hospital and was able to get him an appointment in the Center for Sleep Disorders on Monday. Hopefully they will be able to explain the report and give us some explanation as to why he stops breathing periodically during the night. I am still not convinced it was an accurate test since he didn't sleep a lot of the night and pulled just about every wire off at one point or another, so I do plan to ask about that as well.

It is very frustrating that we still have no answers and have learned of a completely new problem. If they do decide to put him on oxygen at night we are in big trouble because there is NO WAY he will leave it on!!!

Will update again next week as soon as we learn some new info.

Happy Halloween (a little late)

Halloween was postponed until November 5th here in Atkinson this year due to the October snowstorm and the widespread power outage!  Connor was the cutest monkey I have ever seen and of course Makayla dressed up as a princess =)  What else would she be?!?! This time Makayla dressed as Belle from Beauty and the Beast because her and Emma decided to trade their dresses from our summer vacation to Disney. We all went trick-or-treating around the neighborhood and made it down to Mem and Pa's house for a short break before heading back home.

Pa and all the kids =)