Thank you to everyone on this wonderful board for your encouragement and advice.  We were able to feel calm and prepared when we went to Nicholas's surgery because you shared your experience with us.  I'm so happy to report that the operation seems to have been very successful.  

Nicholas went to surgery on Tuesday and came home yesterday after only one night in ICU when the doc had expected three.  (I should have posted then, but we had still had to deal with getting our heat on downstairs in our house.  Did I mention our pipes were frozen the morning of the surgery?  But such a minor thing.  Back to the report.)

Everything went so well.  First, he did not obstruct in OR before they could get the breathing tube in, which the doc thought would happen.  Doc removed the adenoids, and did a full tonsilectomy rather than the partial we had planned because he said he could see it was necessary once he got in there.  He skipped the tubes in the ears because the fluid had magically drained after months of monitoring it.  

Nicholas woke up an hour after surgery and immediately began demanding food.  We tried to go gradually with liquids but had to give in because he was very demanding.  He was out of sorts, so convincing him to take the medication took a while, but after he had it, he started eating and hasn't stopped.  Maybe because he hasn't eaten much in his four years!  And he has been very hungry since getting over that terrible stomach virus last week.  I am truly amazed and the doc actually had to cut him off from food at one point.  

Here is the best part.  Although he had an AHI of 20 before surgery, his first night he had zero apnea events and his oxygen saturation was 100%.  I don't know if that means he's clear or if the apnea could come back?  I spent the night by his bed in the hospital but swapped with my husband at 6am in caring for our 2 year old.  So I missed it when the doc came by and discharged him.  I'll have to call now and ask my questions.  

Last night at home, his breathing didn't seem quite as clear but I didn't see/hear any obstructions.  I'm not really familiar with central apnea, but he seemed to be breathing regularly, just a little more noisily.  I'm wondering whether steroids during the surgery kept swelling down and whether that's what I'm hearing.  Or it could be fluid?  

I'm very grateful that we haven't had any of the complications I was so worried about.  And we have been keeping with the pain medication every four hours as advised.   He is still a little pale and was exhausted last night, but he seems himself otherwise.

Thank you to everyone again.  You all are such an inspiration.  I've never known such a group of wonderful and courageous moms.  

Sara, I hope Emerson is over the diarrhea and fever-- that sounds like what Nick had!  

And I hope for all good things for all of you wonderful women and your wonderful kids.

glad to hear your good news!

Marlowe,

I just want to say I am sooo glad everything went better than expected and Nick is on the healing side of things!!

Vicki


_________________
That which does not kill you makes you stronger-Friedrich Nietzsche
Friedrich must of had apnea.

Marlowe,

I'm so happy to hear that Nick is doing so well!  That is great news.  And I'm not surprised that he's eating better already!  I think you are right on target about the swelling and steroids wearing off.  There will be significant swelling for at least a few days and you are right that the steroids probably helped to keep that down.  If he's off the steroids now, there is probably more swelling than at first.  You will probably hear his breathing improve over the next few days.  If his throat is still sore, he may not be swallowing as much which could account for an increase of saliva hanging around back there.  I'm sure the ENT will calm any concerns you have - sounds like he's doing GREAT!

Thanks for asking about Emerson.  He is finally getting over his stomach yuckiness.  He even ate a little dinner last night although he hasn't slept well all week.  We also had to go out of town for my grandmother's funeral earlier this week so I think that just kind of threw him off his schedule.  We had to reschedule our neurology appointment due to the funeral so now we have to wait until April 18th to learn more about his CSA.  

Let us know how Nick is doing in a couple of days.  Again, so glad to hear such a great outcome.  Take care.

Sara

It's been a couple weeks since the T&A.  How is Nick doing?  Let us know when you get a chance.

Sara

Hi, Sara!  How are you??  I have been wondering how Emerson is doing.   I'm so sorry that on top of losing your grandmother and having to deal with the sadness of that, you had to postpone Emerson's neurology appointment.  I know what it feels like to get yourself completely mentally prepared and finally get to the date of your appointment-- and then everything is postponed.  It really seems like your doctor could try to accomodate you earlier than April 18!  Surely they have cancellations sometimes, and can appreciate your circumstances?  You must be exhausted.  Let us know how everything is going with Emerson...  I hope for all the best for you both.

Thank you for asking about Nick.  I am surprised but very happy and grateful to say that he really seems to be "cured." We have our follow-up with his ENT on Monday, but he sleeps so peacefully and quietly!  Not a peep out of him, not a single obstruction that I have caught, and not a bit of snoring.  If he has any central sleep apnea, we'll have to find it out with a sleep study-- I don't see it.  And the dark circles under his eyes are fading away.

With the tonsils and adenoids gone, he is making up for years of not eating.  I have had to loosen the elastic belts in all his pants already, by three buttons.  

He is still incapable of being still during the day, and he has some behavioral habits (whiny and kind of aggressive) that haven't changed.  I hate to admit that that's probably just his personality.  But I'm hoping that as he pays off that sleep deficit, maybe he will become more calm and form some better habits.  We are working on it.

This forum is really wonderful.  I hope one day all the kids are apnea-free, but until then this group is wonderful support.  

Very warm regards,
Marlowe

p.s.  as I am typing this, Nicholas and his brother are pretending to do a sleep study on me...  Funny how that becomes part of their vocabulary.  I know some of the kids (and parents!) unfortunately will get a lot more medical training in this way...

Hi!  I am so glad to hear things are improved with Nick.  Isn't it nice to hear them sleeping so peacefully?  What a difference the T&A can make, huh?  Emerson no longer has the dark rings under his eyes either although in his 12 month pictures, they were really bad.  It looks like he's recovering from having 2 black eyes!

When I called to reschedule his appt, I explained that my grandmother passed and that I have a 19 month old with central sleep apnea.  The dear lady tried every doctor in the practice and did her best to get us an earlier appt, but to no avail.  The good thing is that they don't overbook appointments so you get plenty of time with the doctor.  I called the other day just to see if they had anything sooner and the lady instantly recognized my name and said I was on the waiting list but nothing had opened up.  

In the meantime, Emerson is sleeping really well.  I think being able to play outside in the nice weather is helping to tire him out.  I still hear him take the deep breath and then not breathe for several seconds, but it doesn't seem to last more than 10 seconds.  I'm not sure if that's good or bad, but I know it could be worse.  I have come to realize that I can't fix his central sleep apnea so I just put it in God's hands every night.  Hopefully the appt with the neurologist will shed some light for us.  

This is a tough weekend for me as today marks the 1 year anniversary of the "accident."  This would be the night he stopped breathing after one of his surgeries and I witnessed him die -for lack of a better word.  I won't go into all the details but obviously the scariest moment in my life and it haunts me everyday.  I'm so thankful for the staff at the children's hospital and that they were able to reverse his morphine, suction him, then give him CPR and successfully revive him.  I often wonder if this incident caused his central sleep apnea.  I guess we'll find out on April 18th!  

Again, I'm so happy is doing well which means you are probably doing well also.  

Take care,
Sara