Hi.  I just found your board and was wondering if anyone has advice about what we can expect after my 4 year old's T&A?  

We're going into surgery on Tuesday and are scheduled to spend the night in ICU.  He has "moderately severe apnea" with an AHI of 21 and he is extremely thin.  I'm terrified that he'll still have apnea after the surgery and won't be able to wake himself to breathe until the anaesthesia wears off.   I know they'll have monitors, but if he stops breathing, how long might it take to "fix" it?  

I feel like I have to be paranoid because I no longer trust doctors to take care of him.  And i feel terribly guilty for not figuring out he had this before.  I suspect he's probably had the problem for two years but the doctors dismissed all my concerns and complaints until I finally caught him choking over and over while he slept.  It doesn't seem to start until he's been asleep for a while.  His doc was always dismissive when I told him that his breathing sometimes isn't right, he's hyperactive, never eats, has behavioral problems, isn't growing, can't gain weight, doesn't hear well.   Hard to imagine that the doc didn't get it-- now that I know the symptoms, it's so obvious.  Also hard to imagine that a T&A could possibly address all this?

If anyone has anything to share, I'd welcome it.  Even horror stories, because I don't want to be caught off-guard.  Or if I'm being overly paranoid, please tell me.  

Also, would love to know what to expect more long-term? Could the T&A really address hyperactivity and behavioral problems?  Weight-gain?  He's "normal" apart from the apnea, I think.

Thank you so much!
Nick's Nervous Mom

Hi Nick's Mom,

Yes pediatric sleep apnea can have the effects you describe. This info. is at the ASAA main site:

For Parents

A T&A has a high success rate of helping apnea in kids, around 70% I think. Did you get a different pediatrician? Is your son seeing a doc. accredited in sleep disorders? You can only take things a step at a time and know that you have always done your best for that point in time. You sound like a great mom. They will take good care of Nick in the ICU and they will carefully be monitoring his breathing. They will not let him stop breathing. Remember, it is the caring, nurturing RNs who will be watching him, not the doctors, if that is any consolation.  Plus, in the ICU, it is 1 RN for no more than 2 patients and they are literally by the bed.

I had my T&A out when I was 6 yo. I remember feeling pretty miserable, but it was offset by the ton of ice cream I got to eat.

Keep us posted!!

Vicki


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

Vicki wrote:

I had my T&A out when I was 6 yo. I remember feeling pretty miserable, but it was offset by the ton of ice cream I got to eat.

Oh wow my sister and I had ours done at the same time when I was 6 and my Dad told us we would get ice cream.  We didn't and I was so mad when I came out of the anesthesia because they had taken my pillow and there was no ice cream!    I remember having a very bad sore throat and   being nauseous from the ether.  I'm old they don't use ether anymore.  


_________________
Hoax~Slayer Forums

Nicks Mom,

I would imagine that the reason for the night in the ICU after the operation is just so they can keep a close eye on him due to his history of apnea.  The ICU is the safest place in the world to have sleep apnea, AND to be under anesthesia.  I am sure he will be in good hands there.  I hope you can take comfort in the fact that this is a procedure that is done very frequently in kids with apnea.  (Not to make light of your concerns, of course-that's a mom's job.)  I also would encourage you to see someone who specializes in sleep disorders, especially if you havent been satisfied with the care you hav received.  

As for the long term stuff, we can only speculate based on what we know, I suppose.  I am inclined to think that improving sleep at night could certainly improve behavioral problems, and possibly even hyperactivity.

Thank you very much for the reassurance.  It's good to hear from folks with more experience that the ICU will really take care of him.  Hooray for RNs.  I got myself a little panicked reading about post-operative edema and watching him choke on every breath in the middle of the night.  I feel like I've let him down, so just want to make sure I'm on the ball now.  

I am trying to find a new pediatrician.  I don't have a sense for whether most pediatricians would have caught this.  The one we have had is very experienced and he didn't even have a clue.  Just looked at me like I was some overprotective hypochondriac.  Even now he acts like sleep studies are nonsense and apnea is no big deal.  It's amazing to me to read that there is such a thing as a home sleep monitor that is prescribed for some babies!  Some doctors must believe that it's not normal/acceptable for babies to snore and breathe irregularly.  And maybe catch on that the reason a kid doesn't eat for years is that his tonsils and adenoids are too big.  

Three more days!   I'll post after the surgery. Nicholas asked this morning if we could please go to the hospital today.  He had been playing when he gagged on his own tonsils and threw up.  Oh well, three more days!

nicksmom wrote:

The one we have had is very experienced and he didn't even have a clue.  Just looked at me like I was some overprotective hypochondriac.  Even now he acts like sleep studies are nonsense and apnea is no big deal.

You need a new pediatrician/sleep doc.  Your physician isn't as educated as you thought if he blows off sleep disorders.  They may be the most experienced physician in the world but if they won't listen to you, then their experience doesn't matter.  It sounds like his experience is in the same thing over and over and he is not open to learning anything new.  These people work for us, your son's health is at stake.  Physicians are far from gods.  In the area of pediatric sleep apnea, you now know more than Nick's doctor.

Vicki


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

Thanks for the definitive advice on getting a new doc.  I will do it.  I appreciate that kind of strong opinion since I don't know anyone who has had this experience, and don't have any family.  

Unfortunately, Nicholas has thrown up three times a day, so I guess he has caught the stomach virus going around.  I'll find out for sure on Monday but I'm guessing surgery won't happen Tuesday as scheduled.  

Cheers

Hi Nick's Mom

My 7yo DD had her adenoids out just before Thanksgiving.  Her AHI was between 18 and 28 (2 studies due to tech error) before surgery.  After surgery it is 8.1 so she is on a cpap......but that is fine with us and she is tollerating it very well.  Although it did not completely cure her apnea, it did make it easier for her to breath in the daytime, so we are happy.  I have heard of a lot of parents who did not know that there were a few kids who still have apnea after surgery and are very angry about this.  I am not angry about this, I am thankful that we know now rather than later and that the treatment is not painful or distressing. I hope things go well for Nick and that he is in the vast majority of kids who are cured....

About Chris's surgery......because she was 7 it was done as an outpatient with no anticipated (or actual) hospital stay.  She does not tollerate anesthesia well, the last time she was sedated for an MRI she was fine when they sent her home, but later became very very ill and was back in the ER at 2am for dehydration.  The DRs listened to me and gave her 2 types of anti-nausea medication during surgery (very strong stuff for cancer patients) and another when she was in recovery.  She was fine and was the only kid in recovery not throwing up.   She was sleepy on and off for the first 3-4 hours then she was fine to go home.

At home she was just fine, up and playing.  She did not want to eat anything but popsicles (ice cream can make their throat sticky) everything else tasted funny.  We were warned by a friend that we needed to give her the tylenol on a schedule, not when she said she needed it because then it was too late.  She only needed it for a day or so.  Her first night she was sleeping well.  The second day she was fine, but still not eating.  That night the sterioids they had given during surgery had worn off and I could hear every breath she was taking.  It was horrible to hear her fight for every breath, I put the baby monitor on so I could make sure she was still breathing.  (I probably should have called the dr, but did not)  After that night things got better and better every day.  She finally ate on thursday.....Thanksgiving....mashed potatoes and turkey.  The hardest day was about 2 weeks after surgery when she was sleeping with me because I was seeing if she was still moving her legs too much, and I could hear and feel her not breathing for 15 seconds......I wanted so much for the apnea to be gone and it was not.

She is a small child, 47lb and about 45 inches.  She has not grown or gained weight since the surgery, and is now on the bottom of the heighth and weight chart.  Chris is our PCP's first apnea/cpap kid, and our neuro said she was too young for cpcp (apparently he does not have other kids on cpap),  the DME had not fitted a child younger than 10.......I feel like Chris has joined an exclusive club......the post-surgery apnea kids club....lifetime memberships are avaliable....

I hope that Nick is over the virus he had and that he can have the surgery tomorrow.  I am glad to hear that he is being kept overnight in the ICU, that would have made me feel much more comfortable if they had done that for Chris.  I hope that he recovers quickly and that his other issues are resolved.

Hang in there, things will be a little rough after surgery, but they will improve.

Susanne  (sorry for any typo's I am experiencing a Girl Scout Camping Hangover)

Hi there!  My son, Emerson, had a T&A done when he was only 14 months old.  He, too, was diagnosed with OSA and for that reason didn't wait until he was older to do the surgery.  Because of his age, we were also scheduled to stay overnight in the hospital.  We ended up staying 3 nights but only because he refused to eat or drink anything and would have gotten dehyrated if sent home.  After the surgey, Emerson experienced some difficulty breathing.  His face would turn blue and his oxygen saturation would drop into the 30's and 40's.  This was probably due more to his tracheamalacia (floppy trachea) than anything else but the nurses were right there and he perked back up with some oxygen.  This seemed to cure itself within a couple of hours.  I think the biggest problem we encountered was that Emerson is too little to talk so he couldn't tell us what he wanted.  We just had to guess and apparently guessed wrong for the first 3 days!  I agree with the other mom that you need to give the tylenol every 4 hours (or whatever the time amount is).  It works better to stop pain before it starts than to stop it in the middle.  Emerson stayed on the tylenol with codeine for a week then went to regular tylenol for another week.  We heard improvements in his breathing within about 5-7 days and by 10 days out, I couldn't hear him breathing at all while he slept!  It was kind of scary because I got so used to him sounding like Darth Vader.  

I know the term "ICU" is very scary.  Unfortunately, I've had quite a bit of experienced here with Emerson.  The T&A was actually his 5th surgery.  His first 17 days of life were spent in the NICU and when he was 8 months old, he was back again for several days.  It is the best place for your son to be monitored.  He'll get extra special attention and be hooked up to different monitors.  If his oxygen level starts to drop, the machine will beep.  There will probably be some type of chair/bed for you as well so you can be right there with him.  

I've talked with another mom whose daughter had the T&A when she was about 3.  She saw dramatic improvements within a couple of days.  She said she instantly started eating and talking better.  I'm hoping you'll see these types of results for your son.  I hope he's over his stomach virus soon.  Let us know how everything goes.  

Take care,
Sara

Hi Suzanne.  Thanks for sharing your story.  I'm sorry to hear what you and Chris have been going through.  You seem to have a great attitude in spite of it all.  I can imagine how devastating it must have been to realize the apnea was still there.  It's hard to sit next to your child holding your own breath, waiting for them to breathe.  

I don't know how I will handle it if Nick's apnea is still so significant and if he can't gain some weight.  I think I'm going to be very upset.  But I can at least try to manage my expectations now that I've heard that it doesn't always work that way.  I am trying to keep perspective-- apnea is certainly preferable to some of the truly terrible things that happen to some kids.  

I hope that Chris starts gaining weight and growing soon-- Thanksgiving was not too long ago.  And hopefully one day she will check out of that exclusive club.   You said she had adenoids removed but not tonsils?  Any chance that tonsilectomy would help?  If not, it's wonderful that she accepts the CPAP-- like you said, it's not painful or distressing in any way.    

I'm making notes about the anti-nausea medication, popsicles vs. ice cream, and taking the tylenol on a schedule.  That is very helpful.

Unfortunately, surgery is delayed...  Nick has not been able to keep much food down since Saturday morning, and this morning he has a fever too.  He is just so thin to start with and he has been crying because he is so hungry.   His low weight is one of the reasons for keeping him in ICU after the surgery.  

Good luck with that camping hangover!  I hope it was at least fun earning that!
Marlowe

Hi Marlowe,

I sincerely hope that Nick does not join Christina at the "Apnea Kids Country Club".  If he does end up as a member of the country club, it is not such a bad place---as far as these exclusive country clubs go.  The membership does have a tendency to be a long term commitment, but there are benefits along the way .......cool mask, tube, machine and making people stay up all night to watch you sleep.  But the best benefits are the long term ones of not having health issues from oxygen drops, stress on the central nervous system, cardiac stress, and parental stress of knowing something is wrong and having nothing you can do about it.  The membership is quite exclusive, you usually have to provide proof of T&A, or one part of that combo to be admitted.  I have learned that under special conditions you can join without the T&A, but you have to be quite special for that admission.  I have to tell you that we are working on joining another "country club', but the apnea kids is the easiest to maintain membership in without a lot of stress (unless you like stress, then you can stress all you want, but I recommend against that route).  The apnea kids country club is just another lifestyle.....breathing.

All joking aside, this has not been that bad.  Chris did not have her tonsils out because they were not contributing to her problems.  If Nick does join Chris as a mini hosehead, you will both be ok.  The fact that you want to know the truth, not just the good stuff, shows that you want to know what is ahead and are willing to deal with it.  It is not easy to know that Chris still has apnea.  The cpap is fun for her...not so much for me......but if she had not had surgery I would always wonder if I could have done something that could have cured the apnea all at once rather than treat it every night.  Because she had the surgery I don't have to wonder if there was some other treatment that would free her from apnea, I am free to help her adjust to the cpap because I know I have done everything else that could have been done to cure her, now I have to teach her how to live with apnea.

I hope Nick feels better soon.  It is no fun to have a sick child at home, and even less fun for them.  I hope his surgery goes well and that it is quite sucessful.  If you want to talk please PM me, I'd be happy to help you through this.  Chris had surgery when she was 3, so I know it is hard to hand a small child over to the drs.  I am writing about Chris's adventures with cpap in "the diary of a mini hosehead" if you want to know more about life with a child on cpap.  

Don't worry, it will be ok in the end, sometimes it just takes a while for things to smooth out.
Susanne

Surgery tomorrow!  Well, Nick finally got over his stomach virus on Friday after six days of fever and vomiting.  The same day our area had a flashflood.  So we have been able to keep very well distracted from the surgery!  We took 3 feet of water in our basement and our heat only works upstairs.   Our 75 year old neighbor has been staying with us for three days because she has no heat or hot water in her house.  

I thought we might have to delay surgery because Nick was pretty weak, but he hasn't stopped eating and drinking since Friday-- extremely unusual for him.   We see his pediatrician this morning and I suppose he'll give the go-ahead.  Fingers crossed for tomorrow.  I feel a little mentally unprepared at this point but then I was probably too obsessed with it before.  

Sara-- I wrote a long email in response to yours. but I don't see it on the thread.  Sorry about that.  I've been so tired that maybe I didn't click the Submit button or something.  Thank you for your encouragement.  I'm sorry Emerson had such a rough time from such an early age.  It sounds like it was very frightening.  Wonderful that the T&A did work for him.  Thanks for your well wishes.

Thanks to Susanne for all the help too.  I'll post when we get home from the hospital!  

Cheers

Hi Nick's Mom,

OK - at least I know I'm not going crazy.  I thought for sure that you had written a long post intended for me the other night but when I went to respond the next morning, it wasn't there!  Not sure what happened, but oh well....

Sorry to hear about the flooding in your home.  Where do you live?  I'm sure your neighbor is grateful for you taking her in.  That's very kind of you.

Emerson has certainly endured a lot in his short little life, but you wouldn't ever know it to look at him or watch him run around.  He was born with a birth defect called Esophageal Atresia/Tracheoesophageal Fistula.  If you ever get bored, you can look it up.  He's doing very well now and I don't think his apnea was related to it at all.  Unfortunately, he now has Central sleep apnea.  I've waited 6 weeks for the appointment with the neurologist that was scheduled for this Wednesday.  But my grandmother passed away last night the funeral is Wednesday so now we're rescheduled for April 18th.  

I'm glad to hear Nick is feeling better.  Emerson woke up with diarrhea (I can never spell that word) yesterday and a fever of 103.  Seems to be doing much better today though.  

I'm sure Nick will do great tomorrow and I'm praying that the T&A will eliminate his apnea issues.  I'll be thinking of you all.  Take care.

Sara

Hi Marlowe,

I hope everything goes well tomorrow.  I'll be thinking of you an Nick.  Keep us posted, we really do care about both of you.

Susanne

Marlowe,

I'm thinking about you guys too!!  Be sure to post tomorrow!!

All of you folks have so much going on, it has to be really difficult.  I have a special needs kid to, but her problems are emotional/mental.  It is just really hard to see our kids struggle and suffer from whatever reason.

Vicki


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