Ethan's 6 Month Followup At Children's

Monday (6/20/11) was Ethan's 6 month (give or take) followup with Children's. He had another hearing screen followed up with visits from his plastic surgeon, social work, otolaryngology (ENT), and pulmonary (his sleep doctor).

His hearing screen was not great - but that was not due to the test results but rather a function of his age and their inability to get a good test in. Up until now, the tests consisted of him sitting in a sound proof room (on Dina's lap) while an assistant used toys and props to keep Ethan's attention focused on her/forward. Then, at random times, the tester (in the adjoining room) would play a sound. If Ethan looked in the direction of the sound, various things would light up and move. The sounds would be varied in amplitude, frequency (pitch), and direction. As long as Ethan looked in the direction of the sound, they would conclude he could hear that frequency.

The problem now is that Ethan is of the age where this kind of thing gets old very quickly and he eventually simply lost interest and would not look at anything except what was currently occupying his attention. He would look initially, but eventually, would stop looking, but at times would just mimic the sound himself instead of looking.

The test administrator herself remarked that he is of the age where the test may or may not work. Ostensibly, at his next hearing screen, the tests will be different as he will be at least 6 months older.

What results they did get were fairly good and consistent with previous results.

The visit with the plastic surgeon was uneventful. He examined the scar from the macrostomia repair and noted it was still fairly large. It is mostly on the inside of his mouth and therefore not that noticeable from he outside. He mentioned that if Ethan were to have an upcoming surgery, he might take the opportunity to go in and do a little to the scar to help soften it up (either by a very quick and minor procedure or a cortisone injection). This segues nicely into...

His visits from otolaryngology and pulmonary both indicate that Ethan will need to have his tonsils removed and at least some portion of his adenoids removed. This was no surprise given what has been going on these last few months. We hope to have this surgery scheduled by end of next week.

The plan is to continue the oxygen until the surgery, and then continue the oxygen for 1-2 weeks post surgery as he heals. Once he's recovered from the surgery, we will then take him off the oxygen until a follow up sleep study which will be 3 months later where he will be evaluated again. It is possible (though hoped not!) that he may need to go back on oxygen at that point.

In the worst case, should the tonsil and adenoid removal prove ineffective, they will put early jaw surgery back on the table as an alternative to help open up his airway. It is, however, expected that this upcoming procedure will alleviate all his current sleep problems.

- b