Heath's Journey 4/6/2011

mujul79's picture

ENT visit today:
The Dr's have talked to me and to eachother. They agree that the apnea is more of an ENT problem then a Chiari one at this point. Heath had another exam today and his tonsilles are larger then when he first saw Heath in the fall. We talked about the order that things should take place to help him and it was felt that for Heath's best quality of life long term to try an Tonsillectomy and Adenoidectomy before moving on to something else. Heath has no hx of infections but because they want to go the least invsive treatment first we are going to try this first. This will be his 3rd ENT surgery since Aug of 2009.

I did get alittle more info about his sleep study results. He has mild to mod OSA with ave of 2x's and hour he stops breathing and that is not the big deal. What makes it so bad is that in Heath's case he has 10 or more every time he gets into REM sleep. REM sleep is needed it is the most important time of sleep and Heath's is so bad that he is not getting healthy sleep and causing him other issues because he is not waking when he stops breathing. SIDS is not a 0% risk but because of Heath's age the ENT feels it is not as big of a risk as the OSA is a risk of hart problmes coming up or other stress on his body from not getting the rest/O2 he needs. OSA can lead to cronic issues down the road from his body working so hard.

Now if you recall Heath already had his Adenoidectomy back at the start of 2010 and we left his tonsilles alone because of his age and the risk of bleeding. Heath is still under 4 so the risk of bleeding is high but being that he needs some kind of help the bleeding risk is now worth it since removing only the adenoides did not help. This Dr told me that 2% of the little kids under 4 do have some issues with bleeding. He is having an A&T because the ENT thinks that since he was so young the adenoids may have had some tissues left behind that he can clean out now that he is bigger. They are going to also scope his ears and make sure all is good while he is under. His eardrum looks fully healed from what they could tell in the office today.

April 28th Pulmonologist vist
April 29th Genetics
May 2nd hearing test
May 9th A&T surgery
June 9th ENT visit
Repeat of a sleep study.(I have no date yet)
June 27th MRI
July 4th New baby is due
Decompression for Chiari will be done if the sleep study results done after the A&T are not better
Another sleep study
Tracheostomy if the sleep study after both surgeries is the same

So we are still in the hurry up and wait game and it has no soon end in sight.