Harry's Tonsilectomy--Children and Apnea

For those of you following my story and my son, Harry's (age 4), here is an update.

He had his tonsilectomy yesterday morning. The surgery itself took about 20 minutes, then a couple of hours in recovery before they let us go home. After an initial couple of hours when he was clingy and sleepy and couldn't be much understood when he talked, he started having longer periods of wakefulness between naps. He was very articulate and not in much pain and responded well to our urges to drink, drink, drink and ate about 3 popsicles yesterday.

By the evening, he was acting like he felt better than I did after 10 days to two weeks of recovery. At one point, as he returned from the bathroom to his spot on the couch, I had to tell him NOT TO RUN. He asked for a shake and we gave it to him, but he didn't drink much of it. BTW, I'm allergic to milk and they told us to hold off on dairy for a few days so I made a dairy free shake with coconut milk sorbet, strawberry jam and rice milk to keep excess phlegm at bay.

We only had one minor incident in the night when we all slept thru his dose of CHILDREN'S TYLENOL. Yes, the doc recommended we try just plain old children's tylenol at the regular dose--and it is working! We filled the scrip for tylenol elixer with codeine (and anti-nausea suppositories to have on hand just in case) and we never needed it. And I don't think we will! He started to cry from the pain but we talked him into taking the meds even tho they hurt going down. Then we started setting a kitchen timer for four hours and that is working for us now.

This morning he is bright eyed and bushy tailed. He has to be constantly reminded not to run, jump and hop. His tv dreams have come true. We restrict his tv viewing to only 1 or 2 hours a day normally, but he gets unlimited screen time now, his dream come true.

Today he got a chocolate shake for breakfast and his midmorning snack is thinned out old fashioned oatmeal with some non-dairy margerine and blackberry jam for flavor.

He is happy and almost entirely unaffected. He got a new toy from his Auntie and he is really enjoying using it to draw pictures etc. It is a doodle pad. He still is snoring a bit from the inflammation in his airway and his voice has changed. I expect that will change shortly--although I have heard sometimes the voice change is permanent.

I know I am going to have to just let him be his normal self soon. I won't be able to stop him from his twitchy self! But a couple of days of forced rest are absolutely essential I think.

He just told me the oatmeal was a little too scratchy after a few bites, so I took it and pureed it with my stick emmersion blender and now he says it is much better. It resembles a shake now, but it should stick with him longer.

In case you haven't been following our story. I have severe apnea and was on bipap 16/12. I was diagnosed in June. Several doctors urged me to get my tonsils out which I did on July 30, 2007. After my recovery period I started to see both my AHI and my 90% pressure go down. I started decreasing the lower end of my pressure range on my auto bipap every few weeks as my ahi went down. I have now settled on a average 90% pressure of about 9/6, almost half of my original pressure.

My son has always been a poor sleeper. As an infant he was colicky and was diagnosed with reflux. We had quite a roller coaster ride in those days with sleep. I became quite an expert on kids and sleep.

Over the summer (I can't remember now exactly the timing of how this played out) I took him to my sister's house and we slept in the same room. Harry woke me a couple of times (over the sound of my bipap) with what sounded like apneas to me. I decided to bring this up with his pediatrician at his annual checkup coming up toward the end of August. I tried to get an earlier appt, but his ped was on vacation. His pediatrician said his tonsils were certainly large and recommended a soft tissue xray to see how big they really looked as well as the adenoids. They confirmed they were blocking the airway and sent me to an ent, which happens to be mine--he is so good he even takes care of neonates.

He recommended removal asap. Our trip to Disney at the end of Sept made the scheduling a pain (it was already paid for or we would have pushed it back), so we had to wait again (waiting seems to be the norm when it comes to apnea) until yesterday.

He said ANY apnea in children is unacceptable because they desaturate so quickly. They wouldn't bother doing any kind of psg on him because they felt with my experience and knowledge of the disease along with my observations (pure torture from my standpoint as a mother--i observed him having apneas on every occasion I observed his sleep except for one occasion) would be accurate enough combined with the obvious size issue of the tonsils to make a positive diagnosis.

He said that the Tonsil/Adenoid surgery cures about 99% of children of the disorder. Further research I have read online, both opinion and scientific study, leads me to believe that this may actually prevent him from developing it as an adult.

Apnea doesn't just start overnight. It can be a cascade of events. Each apnea we have can cause inflammation in the airway and even cause the suctioning up of acid from the stomach, causing futher damage. Over time the inflammation can worsen bit by bit until it is full blown and irreversable apnea.

Poor sleep leads to even poorer sleep, which is well know in the sleep community. Just like good sleep begets good sleep. As parents we often know that if you put a tired kid to bed too late they are more likely to wake up early, rather than sleep-in, compounding your problem with a tired, cranky kid.

It is also being shown more and more that ADD/ADHD symptoms are related to poor sleep. Americans just don't sleep enough period. The under 5 set needs 11-14 hours of sleep and most don't get it. Even in my well-educated group of stay-at-home-mom friends a lot of their kids don't get enough sleep. Then they wonder why their child is cranky and aggressive all day long.

Anyway, I hope Harry's story might help someone else. Us old folks aren't living in a vacuum. Kids get apnea too. I hope with time I will be able to report Harry is sleeping better and less drowsy and distractable during the day.

Jen

Thanks for the detailed report, Jen, and good luck to Harry - or as they say in Swiss German - Gute Besserung.

O.

That's great. Isn't it amazing how much more quickly they heal???

It is so stressful to see your kid go under the knife, though.

My daughter had very scary OSA from tonsils/adenoids at age 6, and had hers out as well.
It worked wonders for her, and she is now 14 and has remained snore and apnea free. (I still check on her periodically.)

Wishing Harry a speedy recovery! And some good sleep time for you!

Thanks for your comments NeednZzz's. It is good to hear that other parents have had similar experiences. I hope Harry and your daughter continue to be apnea-free due to our diligence and awareness as sufferers ourselves. Yesterday morning I was beside myself with worry. Now I just feel absolutely amazed at my son's ability to recover.

He just ate two scrambled eggs! Yippeeee!

Jen

Had my tonsils out when I was three. Still developed severe OSA as an adult.

I'm so glad to hear that it went well. I laughed when I read about the unlimited tv/video watching. My grandkids are restricted to very little tv/video watching and now are school age. They don't seem to care at this point. But at one time they really wanted to watch it if they could.

I too had my tonsils out as a preschooler, so did my brother. I'm sure I've had it at least all my adult life, and probably before then. I have moderate, but I'm nearly positive my brother will turn out to have severe. He weighs much more than I do, however. I'm not a snorer, am average weight, etc.

Not to be discouraging, but you might want to keep an eye on him and make sure he doesn't still have it, albeit in a milder form. (You probably already thought of that ). Or that he doesn't get it at some later time.

Thanks for the report, I was wondering how you were both going.

Amazed and pleased that tonsillectomy is a day procedure now! Much nicer to be looked after by Mum at home than stuck in an institution with a sore throat.

regards

Di

Jen,

Glad to hear that Harry's bouncing back so quickly and recovering well.

May he be bouncing off the walls much sooner than expected.

YAY HARRY!!!!!!!!!!!!

I think I'll go kick my mom in the shin and tell her it's because she didn't have my tonsils removed when I was a child.

BTW, need your "fake ice cream" recipes. Spent the weekend with Mr. Lactose Intolerant who really misses ice cream. I promised I'd sent his wife some of your recipes. Pretty please???

I'm so RELIEVED for you!!!!!!!!! I know how stressful this has been!!! Hey, did you see that video game for preschoolers that is operated by a bicycle? Playskool I think. Saw an ad for it the other day on TV. GENIUS!!!!

Huggers.
Babs

I'm so glad to hear that everything went well with Harry's tonsillectomy and that he is on the mend. Kids seem to bounce back quickly. My tonsils are large and I was told at one time that one more strep throat and mine were coming out. I've heard it is horrible to have done as an adult.

It is wonderful that you had the information and were observant and caught his problem early. You are a wonderful mother. I know it is hard to have a little one have surgery, but know your mind is at ease knowing that it is behind him and he is recovering well.

Babette wrote:YAY HARRY!!!!!!!!!!!!

I think I'll go kick my mom in the shin and tell her it's because she didn't have my tonsils removed when I was a child.

CPAPopedia Keywords Contained In This Post (Click For Definition): video

Had my tonsils out when I was a toddler and I still got it....

Lou Dobbs of CNN just had that done, took him more than 3 weeks to heal before he could go back to work.

Kids have an advantage, they heal faster. My older brother had that done as a kid, today he doesn't have OSA according to the PSG he had.

Hugs to you and Harry! Here's to a speedy recovery!

Thanks for all your kind words! All day yesterday I had a mantra of: no running, no jumping, no bouncing. I felt like I was living with Tigger!

He is doing remarkably well!

I know he can still get it--you betcha I'll be looking for symptoms of it for as long as I'm around!


The doc says the reason why they heal faster the smaller they are: smaller blood vessels and smaller wounds. I guess two-year-olds heal faster than kids Harry's age. Still have to keep him home from school 7-10 days. Primarily to keep his activity level in check, I'm sure.

LavenderMist: I don't know your age or your cpap pressure or health problems, but it is 2 weeks of pain, but the rewards can be great.

Babette:

I do make my own ice creams and will be glad to send you the recipes. Very, very easy to make with a table-top ice cream freezer. The kind where you put the cylinder in the freezer--no need for ice and salt!

I also like to buy a dairy-free Coconut sorbet from Trader Joe's. $2 per pint and let me tell you--you aren't missing a thing when you eat this stuff. I like it with chopped nuts, puddles of hershey's syrup or hershey's shell topping. Or sometimes I open a snack pack of peaches or pineapple to put on top of a serving. Or I use a dairy-free waffle cone bowl to put it in. Mix ins are endless. Yum! It is just as yummy and creamy (and full of fat) as regular ice cream. The coconut flavor is just as neutral as vanilla ice cream, in my opinion and lends itself to mixing with other flavors. There are also some yummy chocolate sorbets out there too that are dairy free, but you have to restrain yourself in the evening--there is enough caffeine in there to keep you up!

I have seen that video game. It is very interesting. I'm not sure if I like it or want to make fun of it, honestly.

Moby,

Yes, my husband who had his tonsils out when he was 7 was dismayed that Harry wasn't going to be in the hospital overnight. I guess the technology they use for cauterizing is better now? I am not sure. The doctor did point out that the risk for serious bleeding is far greater when the scabs fall off--sometimes they can come off prematurely before the tissue underneath is ready. This is when a small child with a small blood volume is most at risk. He told me to RUSH him to the ER and call him if he shows more than a couple of teaspooons of blood at that time. And this is why I am trying to keep him from bouncing off the walls!

Harry is worst at night when he is groggy and disoriented. When we wake him at the 4 hour mark to give him tylenol, he cries and is hard to calm down. If we let him wake naturally and then try to give the tylenol, he is already in pain and cries and is hard to calm down.

And, I might get criticism for saying this, but I haven't used my bipap for two nights because I want to be sleeping lightly and not have the machine drown out any sounds that indicate he needs something. My old paranoia is back and I'm terrified he'll bleed out and I will sleep thru it. He has managed to worm his way into my bed the last two nights which annoys my husband (he goes and sleeps in Harry's bed) but makes me feel better--I can see and hear that he is ok. ANd I can roll him on his side without waking him when I hear him have an apnea on his back. He is tossing and turning a lot.

The result is I'm tired and a little crabby. I think I might go back to bipap tonight since he seems to be doing so well. I'm hoping I can put my fears to rest. It is really hard when you have a vivid imagination and a tendency toward anxiety.

Jen

I would do exactly the same Babette. Might be difficult to get him back in his own bed later, but worth that risk for sure.

I buttonholed a paediatric nurse at work yesterday and asked about it. She said (no doubt you know) the danger times for bleeding are post operatively disodging the clots when the blood pressure comes back to normal after the anaesthetic and then the approx 10 day mark if there is a 'secondary' infection - ie a wound infection that is acquired after the op. That is the reason for keeping them off school she says. Also, if they catch a cold and cough a lot it can start off a bleed. I guess a lot of bouncing pushes the BP up a bit and that is why it is to be avoided.

"Whatever his weight in pounds shillings and ounces,
He always seems bigger because of his bounces"

They are much less likely to catch anything at home than in hospital though. Hospitals are the worst places for germs! (or the best I guess, if you're a germ)

Glad it's going well. Thanks for updating us

Di