Harry's Tonsilectomy--Children and Apnea

No one thinks you're crazy.

You're a great Mum.

Glad Harry's improving. Hope you're getting some sleep yourself.

Have you set anything in place so you can get some good rest when the acute stage is over? You will be very tired then, and it would be good to have a plan of (in)action to swing straight into without having to arrange it.

Di

My husband has been very responsive to Harry's waking in the night (unlike when Harry was an infant and I came close to killing him (my husband), LOL!). And the only place we can put the baby monitor in our bedroom is Mitch's side of the bed (my side has cpap etc, ya know?) so last night we decided I would use the bipap. I set it at a fixed pressure so the sound would be the same and I could tune it out. Last night we only had to get up once around midnight. And I heard Harry wake at the same time as Mitch. This means that the tylenol with codeine is working better for longer and that he is healing up some too.

There was still some crying last night, but it wasn't as bad as in the past. I think he slept a lot better last night.

Also, Harry's appetite is taking a turn for the better this morning. He asked for and finished a small portion of oatmeal for breakfast. Now he is eating some Jello. This is before 9:15 am.

Of course, as I washed some of Harry's lounge-wear last night (sweat pants) the washing machine broke and there was water in three rooms before I figured out what the strange sound I was hearing was from. Now almost every towel I own is wet and I expect my appliance repairman later this morning.

When it rains it pours! I have to laugh. It is just crazy!

I am getting more tired than usual, but not as bad as I would expect after 3 nights off bipap and getting up multiple times a night. I think the tonsilectomy probably downgraded me from severe apnea down to something somewhat less. Which my 90% pressure would indicate. It would be interesting to get a psg to see, if I can. I see my sleep doctor in a couple of weeks. I don't know if the insurance would pay for one so soon. It has only been 4 months since my diagnosis. Man, have I packed a lot of stuff into those 4 months!

I'll probably catch up this weekend.

Jen

Jen, sorry just a short message for now - i need to go to bed, but I am SO glad that tip worked for you!!!!

BTW, don't get down on yourself for being "paranoid" - you are just being careful! BETTER SAFE THAN SORRY!!! As you said earlier - SIDS is such a big problem and it's probably very highly correlated with apnea (I think it *is* apnea), that I am sure you are NOT overreacting. So be proud that Harry has such a caring, dedicated mother!!

I agree with Moby - at some point think of a way to unwind, you are probably running on adrenaline at the moment and it will be easy for you to get sick (exhaustion, flu, etc) once the ordeal is over. Make sure you take care of yourself and you will be able to take care of your family better too : lots of Vitamin C and B, and don't forget zinc (ok i'll get off my soapbox ha ha).

Wishing you more restful nights and stress-free days....

hugs and kisses!

and sorry to hear about the washer

i would like to make a joke now but i'm too tired, so maybe Babs can fill in, she seems to always have a good sense of humor about things

Hey guys. Harry had a pretty good day.

I did a bunch of research on this crying at night thing just now and have come to the conclusion that he is suffering from "Night Terrors." It is hard to understand or explain but it happens a lot in sleep disordered kids. It usually happens 90 minutes after going to bed (check) and the bouts of screaming and crying are unconsolable and last about a half-hour (check). Children who are under stress are more likely to have them and they occur most frequently in kids between the ages of 3 and 8.

I also read a bunch of studies on sleep disordered kids who present with all kinds of crazy symptoms and the common thread seems to be that tonsilectomy/adenoidectomy can help almost all of them.

http://www.medscape.com/viewarticle/447824


There is also a new surgery called a tonsilotomy (notice spelling is different) and is only a partial removal of the tonsils, just enough to open the airway. Supposedly it has a faster recovery time.

We just spent a good bit of time trying to get Harry to calm down again, which prompted the internet search. He went to bed super-early tonight by his own choice. At the 90 minute mark we spent 1/2 an hour trying to calm him down. I wouldn't even CARE that he was crying if he didn't cough about 40 times a minute. And I wouldn't care about the coughing if it weren't for the surgery. It is a terrible catch-22. But, despite these nightly setbacks, he is getting better. And I have to say that discovering what it is and that it has a name (what tipped me off was that he said he was scared when I came into the room tonight) is surely going to make it easier to cope with.

The way to deal with night terrors is just quiet soothing. Avoiding waking the child further and just reassuring. So, next time, I'm just going to hold him and wait. Quiet and gentle. No talking, cajoling, explaining, necessary. None of this ever seemed to get thru to him anyway. He doesn't seem to be able to process information. I, in my igorance, thought he was choosing to ignore me. Now I know, I won't let it get to me anymore (can you say frustration?). He is past the worst danger now and the scabs are still holding on--so I'm guessing they will hold on as long as they need to.

The ignoring sure did work during the day and seemed to help a little last night, but it very well could have been a half hour and I was too groggy to know the difference. So, I'm glad for the tip Echo, because it has helped me immensely during the day.

I can't wait for this to be over. The stress is incredible. Not during the day. He is a doll during the day for the most part. But as soon as he is in bed I get tense, waiting.

The washing machine is repaired. Laundry has been done! Yeah!

jen

I think you are doing a terrific job Jen! I know what you mean about the medication fear. Faith had a really bad umbilical hernia from 2 weeks old until about 5 months. Her intestin was leaking out through the space in her muscle wall and was sitting just under the skin. It was ugly, and it was very painful. I did not want her on narcotics for 5 months. So I instead opted to wake up every hour of every night to make sure that the intestine was pushed back in. I had an alarm for it. Yes, it would have been easier to drug her....but I had the same worries as you.
I am glad to hear the washer is fixed.

Maybe the crying is making his throat scratchy and tickle. It is very sensitive right now, maybe the vibration from the crying is irritating it and causing the cough. Is it a dry cough or a wet one?

I dont think you are paraniod at all. If you arent there to watch out and protect his sleep and his health who else will be? If ever there is a free ticket to be just a tiny bit on the paranoid/cautious side I think motherhood is it. Plus....you have been there! You know what it is like to live with sleep apnea. You know what it feels like to have your tonsills out. No one likes watching their baby go through something they KNOW sucks so bad.

No too much longer now though. You are halfway through. In a weeks time he will likely be feeling much better, and soon after than he will hopefully be free of not only the pain....but the sleep apnea as well.

Oh yeah......did you see the news reports on the cold and cough meds??? They yanked all the ones for infants and are saying that the ones for children under 6 are next and might be off the shelves as early as next week. I am sure you are all up to date on it, but wanted to throw it out there just in case. I know you might not be able to catch the news and such with a post op kid around.

We finally have a name for these nightime crying spells: night terrors.

Everything I have read about them is that they are caused by stress and sleep deprivation. Last night he was up every 90 minutes to 3 hours crying. He begs us to help him stop crying, but doesn't want to be held or touched.

The brain is caught between two parts of the sleep cycle: the brain is still in slow wave, but the body is awake. The result is disorientation and twitchyness. Children usually scream and cry because of the neurological storm that is occuring. Supposedly it has no lasting effects.

I have read of two other moms looking for infomation on how to deal with this after their kids have a tonsilectomy online. So, it must be fairly common. I talked to the doctor on call this morning and he said the only thing that will make it better is time. He said the codeine might be making it worse.

ONe of his scabs fell off last night and he is temporarily in more pain right now. But it should disappear in a few days and this will be over.

So, he is in more pain, so we feel we need to use the codeine. There is no guarantee the codeine is contributing to the night terrors, but he won't sleep at all when in pain, so we feel we have no choice.

We are both so tired. I have spent hours scouring the internet for clues as to what is happening, only to find out there is nothing that can be done to stop it.

I'll report back in a few days when he is better.

jen

Oh Jen, I'm so sorry!!!!!!!!!!!!!!!!!!!!!!!!!!!! And after such a great initial first day!!!!

Harry is lucky to have such savvy parents who can research his problems and help him. I KNOW you'll get through this. I just pray for you all that it happens soon!!!!

Hugs to you all,
Babs

Thinking of you all

Hope you have a better night tonight

Di

xxxxx hugs

Hi. Sure hope the night terrors are relieved when his throat is healed from the surgery.

Now, I am not an authority on night terrors, so I'm just asking if this thought makes any sense, since you are worried about his crying and coughing this next few days causing his scab to come off too soon. I do know it is not thought to be helpful to try to awaken them in the middle of an episode. But, would there be any harm for a few days to awaken him just prior to that 90 minute mark after bedtime? Would that cycle interruption prevent the anticipated event? Just wondering if a momentary disruption might be better than a prolonged distress.

Anybody know if there would be any harm or any success with that?

Kathy

kteague wrote:Hi. Sure hope the night terrors are relieved when his throat is healed from the surgery.

Now, I am not an authority on night terrors, so I'm just asking if this thought makes any sense, since you are worried about his crying and coughing this next few days causing his scab to come off too soon. I do know it is not thought to be helpful to try to awaken them in the middle of an episode. But, would there be any harm for a few days to awaken him just prior to that 90 minute mark after bedtime? Would that cycle interruption prevent the anticipated event? Just wondering if a momentary disruption might be better than a prolonged distress.

Anybody know if there would be any harm or any success with that?

Kathy

I've heard that this works from one person whose child had them. It seems to be worth a try.

Jen, my heart goes out to you!!!
{{{{{{{{{{{{{Hugs to you and your family}}}}}}}}}}}}

Kathy,

Yes, we had read that advice too and we really thought about doing it, but concluded that essentially we had already tried this (when we were waking him to take medicine at regular intervals) and the result was the same. Unconsolable crying. But I have read that that is one treatment for this problem. Most kids only have 1 night terror a night, too, not all night long like Harry was, so for us it was just not probably going to work. One doctor I read about online theorized it has something to do with the maturing bladder of kids this age and taking the crying/screaming child to the bathroom and letting them pee may help some of them go back to sleep immediately.

The night before last was apparantly (hopefully) the peak of the worste. Things started getting much better yesterday. He took a nap that lasted over 2 hours. Previously, his naps would last 90 minutes and then he would have the same kind of crying spell. It was all so weird. Yesterday after the long nap we were able to calm him fairly quickly. He was very listless yesterday and not willing to eat or drink, but after his nap I realized he had only peed once yesterday and "bad cop" Mommy came out. (My husband and I joke he is the Good Cop and I am the Bad Cop--both approaches are good for certain things and we balance each other so one or the other doesn't go overboard.)

So, I went back to my no-nonsense approach about food and drink. Basically telling him to (not asking him to) eat or drink something appropriate that I forced into his hands every few minutes. By the end of the day, he was getting perkier. I think I took a little break over the weekend due to being so tired and having another adult around. But relaxing my guard could be part of why he got a bit worse.

We tried putting him to bed at his regular time but due to the nap he couldn't fall asleep until about 2 hours later. This always happens, so we weren't surprised, just frustrated. When he did fall asleep he slept very well, it seems because there were NO MORE NIGHT TERRORS. He understandable woke every so often for pain med relief and cried a little, but he wasn't twitching and sobbing uncontrollably and was able to go back to sleep asap.

And the best part--he slept until 8:30 am!!!!!!!!!!! This is a child that used to wake up every day, no buts about it, at 5:30. We got him pushed back to 6:30 or 7:00 eventually, but sleeping past 8 happens like, never, ever, happens. He needed the extra sleep so clearly. And this morning he is perky and when he came into my bedroom this morning he climbed up in bed with me and we had a good old fashioned tickle fight!

So, things are getting better. Since we only had to get up twice last night for short periods both Mitch and I are feeling much better today too.

Thank Goodness! ANd thank you all for all your support. I really do appreciate it.
Jen

Hi Jen,
Guess it's been a couple of weeks now since your last post- I assume Harry is all better and everyone's sleeping well?

Those night terrors sure sound scary - i hope those have completely disappeared as well!

take care

Oh, Gosh, sorry! I have been meaning to make an update, but keep forgetting to find this thread.

Harry got waaaaaaaaay better about 11 or 12 days after the surgery. The pain was almost gone and he started eating more regular foods. By the two week mark he was more back to normal.

So, we are back to normal, in the sense that sometimes he wakes up in the middle of the night, crying (not like the night terrors, thank goodness) but not fun nonetheless. Sometimes he wakes up unnaturally early like 5 or 6 and can't go back to sleep. His daytime sleepiness is therefore not really improved much yet. We have realized that giving him a dose of ibuprofin at bedtime must help the inflammation (there is still healing going on) and he sleeps better and longer, sometimes even past his normal 6:45-7:00 wakeup time, which is good--he has catching up to do. But we forget sometimes (darn being human!). Overall, I would say his sleepiness is a little improved but not remarkably so. . . yet.

He saw our ENT for a follow up on Monday and we discussed this. He expected for me to see more improvement in his sleep than this by 3 weeks. He said he is "healed" but there could still be inflammation. He said if his sleep doesn't improve in the next 2-3 months and I witness any apneas after that time we will get him in for a polysomnogram--he says apnea in children is just unnacceptable and is too dangerous and debilitating for us to let it go on. I guess if it is still happening he may have to go on cpap. I hope not, but we will jump that hurdle when we get there. So, I guess early next year we will be examining this seriously.

For right now we are just doing everything we can think of to help him sleep as comfortably and as long as possible so he can feel more normal during the day.

Jen

Glad to hear he's doing better. It's good that you have an ENT you can trust... now have you managed to find a new (accredited) sleep center?

For his sake I also hope he doesn't need CPAP... but if he does, he is so lucky that you have managed to catch it now.

In any case, every body is different, as you already know... and don't forget he also has years of sleep debt to pay off, so I wouldn't be too surprised if it takes him some time to catch up. *fingers crossed*