Sunday, January 22, 2012

Hearing Test & Surgery Update

Daylon had his hearing test a week ago Wednesday and surgery a week ago Thursday.

Hearing test went well, or should we say as expected. He passed in the right ear and left ear was refer, again.

Surgery went really well. They switched the tubes in both ears, and did the adenoid removal. Doctor said there was very little tissue there, so he feels that was not the problem and it isn't really going to make a difference. I guess at least they were able to get tissue to send to genetics so they can see what kind of genetic make up that tissue has.

Recovery has been a little rough for him. He ended up with a lot of pain, which the doctor was not planning on him having. I am sure that the CPAP was not helping at all with the pain part, but he had to use it because his apnea is so bad. We got pain meds for him and that helped him a lot. He has not been eating well and is back down to 32 pounds. Not great when you consider that the end of December, he weighed 35 pounds. He has a sinus infection and a very stiff neck. He is on antibiotics for the infection. As far as the stiff neck goes, I am told that can be a side effect from the surgery and we are giving him ibuprofen 3 times a day. If it hasn't loosened up by Monday, we will go back in to have him checked again.


Daylon ended up going through six weeks of PT to loosen his neck muscles up after the surgery.  We had another Hearing test on February 8th, which Daylon passed, but the audiologist could not see the tube in his left ear and the ear was also acting like an ear without a tube.  So, we had to go back to Doctor to see what was going on with that.  It turns out that when the ear was healing the tube pulled back behind the ear drum and the ear drum healed over it.  Daylon had another surgery on March 1st to fix that.  

Thursday, January 12, 2012

Endocrine Update

Daylon's endocrinology appointment went wonderful. He was 33.25 pounds and 37.25 inches. He grew 1 inch and gained 1.25 pounds. He is now consistently at the 3rd to 10th percentile and was below the first percentile before starting growth hormone a year and a half ago.

We talked about the use of growth hormone with his sleep apnea and there is not a lot of research out there as far as what those risks impose. We do know that there have been 4 or 5 deaths reported, but those children had very low muscle tone, were obese, and had Prader-Willi Syndrome. Daylon has none of those things so the doctor does not feel he is at risk.

That being said he does feel that it is reasonable to stop his growth hormone to see how he grows without it. We are to use up our current supply, which is about a month's worth, and then stop. His height growth will be reassessed in six months to see how he is doing.