Anaerobic

Ethan is now off oxygen. The oximiter was delivered two weeks ago and Ethan slept with it on for one night. The next day, it was picked up and we were advised in the next few following days that the data indicated that Ethan (who still had a touch of a cold at the time) never had his oxygen saturation levels drop below 90.

Ostensibly, when he is 100% healthy, this will improve even more - but even on it's own - 90% is pretty good.

He is still on schedule for a sleep study in December where they will know for sure that the last surgery (removal of tonsils and adenoids) had it's full desired effect. But the results so far are very encouraging!

- bob

A Past Due Update

Ethan came home 9/20/11 - one day later than originally hoped. That was only because we erred on the side of caution. He was starting to eat and drink and behave like his normal self by the afternoon of 9/19 and we were given the option of going home. We decided, after talking with the doctors, that it would be prudent to stay for one more night just to be sure.

As of now (9/29/11), Ethan is off all pain medications and has completed his course of steroids. He is eating and drinking normally now. Tomorrow will be two weeks to the day of the surgery and we were told that the swelling resulting from the procedure should be completely gone by two weeks.

Ethan still makes some noise while sleeping but it is by far quieter by any measure.

We have been told to continue the oxygen for a little while longer. In the mean time, we are to call Children's to arrange for an oxygen saturation monitor and to use it for one night. The next day, it will be picked up and they will review the data and let us know if we can discontinue the oxygen for good. (We have yet to schedule this).

- b

Surgery Date

Ethan's surgery to have his tonsils and (at least some part of his) adenoids removed is set for 9/16/2011. This was the earliest date that was available for both his ENT and plastic surgeon (recall that he will do a minor procedure on his macrostomia repair scar).

If something should open up earlier, we will take it, but as it stands, we are looking at mid September. This also means his follow sleep study will be in December at the earliest.

- b

Trouble Sleeping

Ethan's snoring has become demonstrably worse in the last few months so we called it in. After a cursory examination by his pediatrician and then by Craniofacial at Children's, it was decided to do another sleep study.

The results were quite bad. His oxygen saturation levels were down significantly since his last sleep study (down to about 86% at one point) and he had a significant jump in the number of apnea events - especially during REM sleep which is when the number should go down.

Ethan will be seeing a number of his doctors in a couple of weeks for his regular 6 month followups. One of them will be ENT which will probably take a good look into his airway to see just what is going on.

However, his sleep study doctor did not want to wait even a few weeks without doing anything so Ethan is now on oxygen when he goes to bed. This basically involves putting a tube around his face that supplies oxygen through the nose. This tube is connected to a small oxygen tank (that is refilled every 24/48 hours by a very large unit that looks a little like a Dalek (a Dr. Who reference for the uninitiated)). We tape the hose to his face and run it down under his clothes to minimize any kind of accidental strangulation risk.

The oxygen will continue at least until he has his appointments. Longer term actions will be determined by what the doctors find at his upcoming appointments. Most likely a tonsillectomy will be involved.

Adequate deep sleep is crucial in that the body generates/releases growth hormones during sleep in children.

- b