We consulted with ENT today and Alex will be having his tonsils and adenoids out on Monday. They were able to give us even more specific results from his sleep study which showed that he stops breathing 21 times an hour. 21 TIMES each hour. My heart sank. They didn't even have to tell me that this is considered severe sleep apnea.
I am feeling quite emotional about having him undergo a surgery when we don't know for sure if it will "fix" his apnea but I've talked to all doctors involved and understand that there is no way they can determine how much is related to tonsils/adenoids and other structures versus possible tone issues. THey say his tonsils ARE enlarged but probably not enough by itself to make them want to take them out if it wasn't for the severe apnea. The ENT said they would be looking at his vocal cords, windpipe, etc while they are in there to ascertain if other factors more telling are involved. He said his sense is this surgery SHOULD make improvments in his apnea but obviously he can't guarantee it will "fix" it completley. I do understand that there are no guarantees for anything but I'm very sad about putting him through another surgery right now, especially because we still have his urology one in just a couple weeks (we have a call out to his surgeon for that but I'm told it should not affect his later surgery in any way).
He will be in the PICU (pediatric intensive care unit) over night, possibly a second day as well depending on how things go. They say they would keep any baby this size and with his issues of apnea in the PICU so for us not to be alarmed. I am asking for any one to please send good thoughts and wishes for Alex. I am praying that maybe the doctors are just being overly cautious but maybe this could in fact help his apnea a great deal. Maybe this will help him turn the corner and when he can get truly restorative sleep, he can feel better, stay healthier, grow easier, and continue to soar!!!
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8 comments:
I will be thinking about your family on Monday for a smooth surgery and recovery. Hopefully this surgery will help his sleep apnea decrease by a great deal.
love and hugs to you and your handsome boys!!!
Erin
Oh Holli, I know this has to be so hard! God's hands are in this and he is guiding the doctors to do what is best for Alex. I pray that this surgery is the answer and that Alex will have a full and quick recovery. He is a little rock star and I know he is going to do just great! Sending good thoughts your way and lots and lots of love and hugs!
You will all be in my prayers for this to go well, for Alex to recover quickly and for this to "fix" the apnea issue for good. Many loving thoughts your way.
Of course you are all in my prayers! Please, if you need ANYTHING call me. I can run you coffee, get something from home for you, etc. If you need to talk in the middle of the night or early morning, call me! We are sending all our good wishes.
That last picture just melts my heart. What a sweetie! I hate when our babies have to go through these tough times - it's just so hard - but we are praying for a smooth and speedy recovery bringing smiles and good sleep very soon! I wish we ALL lived close enough to bring you coffee and be there for each other in person! How wonderful would that be?! But in the mean time - we are here for you in spirit. :) Sending lots of love and prayers for strength and rest.
We'll be praying, too!
I'll be thinking of you Monday. This is not a fun surgery - Cici had the same surgery in May, for the same reasons - her apneic index was AWFUL, and she is on oxygen at night because her desats would go down as low as 59! Ack! She's still on oxygen, but after the three week recovery time to get her feeds and pain back to normal, her breathing is so much better. We don't have a sleep study repeated yet so we don't know how well it worked, but I do think it will help!
Holli - maybe you can ask to have the urology surgery done at the same time? just an idea. that is what i will try do with mary. get a lot done while she is under, to minimize the number of times she is under.
good luck!!!!!!!!!!!!!!!!!!!!!!!!!
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