Harry's Tonsilectomy--Children and Apnea

Jen, I'm so glad to hear your good news.
Isn't amazing the way our little ones can grab our hearts? I can just feel your relief
Give Harry a get well hug from me.
Jane

I am so glad to hear he is doing well. I hope it just gets better and better.
Still trying to get set up to have mine out, but we have decided to put another surgery first. I will try to tell you all about it later.

Now if you figure out how to keep him still for longer than 5 min let me know....lord knows I could use that trick!

Yes, my biggest concern right now is the fact that he keeps having these crying spells at night. When he cries, he coughs. And once he starts, he is very hard to stop. We try everything, comforting, rocking, explaining, to getting firm and then finally mean (like saying we will just walk out of the room and leave him alone until he stops) and mean is the only thing that seems to work.


Since it seems cruel to be mean to a kid who has had surgery, we keep trying everything else first. But it has put us a couple of steps back in his recovery (the crying/coughing). Yesterday he was more listless than the 1st day after surgery and ate maybe 1/4 of what he ate the day before. So, after much thought and discussion and consultation with a friend who is a nurse practitioner we decided to try the tylenol with codeine only at night. He did sleep better/longer and a little bit less crying last night, but I would still rather not use it.

This crying/coughing thing he does just makes me beside myself. I know, since I just had the surgery myself and it is FRESH in my mind that the crying and coughing hurts when he is doing it, but that it is also going to extend his recovery time and pain. He has always been a child that was sensitive and yet a little bit manipulative--by that I mean that he can be genuinely crying but shut the tears off immediately if he wants to. Now he is so discombobulated he can't seem to stop. When he was turning 3 and potty training he would wake up to go potty and just start crying for no reason and go on and on. This used to happen all the time. So, I know it isn't without precedent but it is so frustrating because I just want him to get better. And frankly, we are the least prepared to deal with this in the middle of the night when we have been sleeping soundly ourselves.

We tried both letting him sleep until he wakes up and then give the meds, or waking him when the medicine is due for the next dose. Waking him was much, much worse.

And of course, in the back of my mind every cough makes me afraid the scabs will come off before they are ready and he will bleed. I don't know why he coughs when he cries. It never seemed unusual to me until now.

That all said (and I have considered deleting this several times, because why should I burden you all with my own personal fears, but then I think--what if someone suggests something that might help) he is doing better today. He is tired and I will have to make him take a nap today (believe it or not he refused to take one yesterday) but he does seem to be better.


Today is thursday. Tomorrow or the weekend or early next week the scabs are going to come off anyway, if they haven't already. Guess I better get out the flashlight and take a look for myself.

Jen

Sorry Jen, I called you by the wrong name.

I only just noticed.

I knew who you were all along. Just "menopausal brain" is the only excuse I can muster.

If it's any consolation my sons just told me I confuse their names all the time. They don't even bother to correct me, just play along.

Sorry.

Moby,

Please don't think anything of it. My husband sometimes calls Harry "Groucho" which is our 12 year old DOGS name!

Jen

socknitster wrote:Moby,

Please don't think anything of it. My husband sometimes calls Harry "Groucho" which is our 12 year old DOGS name!

Jen

Hi Jen,

Thanks for the post and the update. I can imagine it must be very very hard (I'm not a mother but I'm still trying to imagine...). I wish I had some solutions but perhaps others will. The only thing I can say is that I had my tonsils out when I was about 10 years old, they hurt like hell and I even refused to eat ice cream (i LOVE ice cream).

It sounds like Harry's doing really well and that your motherly instincts have been honed very well, so I don't think you or Harry have much to worry about

I think the coughing while crying is normal - if I'm having a really bad crying fit I start coughing uncontrollably, something about the sinuses getting clogged (from the tears?) and then draining to the throat I think.

I'm not exactly sure why you said you don't want to give him the Tylenol with Codeine - but heck, if it helps, why not even just a little, just for a couple of more nights til the pain starts subsiding? Especially if it helps him sleep through the night (as we all know sleep is precious )

As for the crying spells, how about not reacting at all? I mean nothing, don't comfort, explain, just ignore it like nothing's the matter, and when he sees that you're not concerned, maybe it will make him stop? Just an idea... it works for my partner's 10yr old son - if we even start hugging him to make him feel better, he just howls on and on. If we just sit there and go, oh, what's the matter?, and not do anything else, he pretty much stops after a minute or less... Negative reinforcement ?

Sorry all my "advice" is anecdotal, I am not a doctor, I have no kids of my own, ... I just wish you, your husband, Harry, Groucho, and any other family members we've missed the best of luck!!

My concern with codeine is its affect on the respiratory system--it relaxes it and for a child that I already know is having apneas due to the inflammation there, and because his doctor made such a point of saying that apnea in children is so dangerous because they desaturate so fast, well, you can see my dilemna.

On the one hand it may help him sleep better from my point of view, internally it may not be the best sleep. Also its use can lead to nausea and constipation. I threw up 3 times after my surgery from these pain meds. It wasn't from the anesthesia, because it occurred one time a week after the surgery. So, you can imagine I don't want to have him throwing up now.

I think one of the perpetual states of motherhood is feeling conflicted.

But, I really like your suggestion of ignoring the crying. That would be a tactic we have not tried yet because I hadn't thought of it. If just sit there and pretend he isn't crying, he won't get anything out of it, unlike all the attention he is getting now, which is probably why he stops when I tell him I am going to walk out of the room if he won't stop crying. This is a nicer way to do the same thing! Yeah! Thanks Echo! I love this forum. I can even get great parenting tips here!

Jen

BTW, I'm going to try it after his nap today. He always wakes up crying from naps for some reason. Has done it his whole life. You can imagine how glad I was when he was 3 1/2 and didn't need one anymore. But obviously he needs one now. Yesterday he refused and didn't look that tired or droopy, but today I won't take no for an anwer. I know what is best better than he does.

As I tell him, he needs to let those "Bob the Builders" inside his body do their job and they can only do their job when he is asleep.

Jen

I knew there was some clever reason that you didn't want to give the Codeine, yes it all makes sense. I guess you just have to trust your instincts and hope that the next weeks goes by quickly and easily.

Yes, I was previously surprised by the power of the ignoring trick. As you say I think it has to do with the lack of attention.

Yup this forum sure is fantastic Now if you can send some magic {{ get well vibes }} my way as well (I'm for sure sending you some), I'd be happy to be over this cold soon. The sleep doc said no FFM necessary, the effects of the CPAP can last for up to 2 weeks (huh!??!) so if I don't use it for a couple of days while I have a cold it's no big deal. I really don't trust this guy. Anyhoo that's for another thread somewhere else. end rant (The magical pharmacist drugs have opened up my airways in the meantime yay).

Ya know, I just thought of a couple of things..

Maybe he wakes up from his naps crying because they haven't been restful. I mean apneatic (spelling?). I can get into a total crying fit (pre-CPAP) if I'm woken up before I'm ready to wake up. I feel like a 4-yr old. But I guess you already said that, he has apneas.

Also what about the possibility that he's also experiencing hypopneas - those would be much more difficult for you to detect as an observer, since he wouldn't stop breathing per se. Especially after the surgery heals, I would keep an eye out for those as well (maybe you can get a oxygen saturation monitor to monitor him during the nights?)

Yes, all those things have gone thru my mind as well. He has suffered from poor sleep since birth. Now I suspect he has had apnea all along, but I didn't know anything about it until I was diagnosed. He for sure had reflux as an infant, which easily could have caused apnea or vice versa.

The truth is I have always known that both of us have sleep issues, but the extent they go I was not aware of until now.

I was told by both his ped and his ent that they don't do sleep studies in children because they are too difficult for a kid. But I think both Harry and I would benefit from having a pulse oximeter to occasionaly check overnight O2 sats and I'm going to bring that up with our ENT at our next visit.

With all my research into kids and sleep the only connection I found that kids cry after naps was not getting enough sleep. I had a sleepy child who was sleeping the amount the experts recommended. At the time I assumed it was his personality. Now, of course, I am re-examining all those old notions. It was a sleep quality issue. I always knew he tossed and turned and woke up a lot. Now I think I know why.

And your mentioning of hypopnea--I relayed this very thought to my husband one night recently after I stayed with Harry while he fell asleep and then watched him sleeping for a while and in the first half hour he had 3 apneas that I could see. Wondering what was happening that I couldn't see terrified me. This was a few weeks prior to surgery.

I am actually so grateful that he lived thru infancy and didn't perish from SIDS. Apnea is thought to play a role in that disorder of course. The next child will have one of those fancy crib breathing monitors or something.

It isn't going to be easy to get the doctors to take me seriously on this one, you know. I'm going to be labeled the crazy, paranoid Mom. Sigh.

Jen

ECHO,

IT IS WORKING. BLESS YOU, BLESS YOU, BLESS YOU!

I have managed to prevent or cut short several crying outbursts just since I read that this morning.

I love you, man!

Jen

What worked? Ignoring his crying??? I've seen that on TV, but it never seems to work for ME...

Maybe because I'm ignoring a 40 year old?

Sorry it's heinous!!! I would be so tempted to just drug him up, but I see your point. Unless you're awake monitoring him, you're afraid to go to sleep yourself.

Is there a sleep monitor that could help? Rental baby monitor for SIDS or something???

GIANT CYBER HUG TO YOU BOTH!!!!!
Babs

you're afraid to go to sleep yourself.

Exactly.

Is there a sleep monitor that could help? Rental baby monitor for SIDS or something???

When I had my surgery I asked for a pulse ox for post surgery and the ENT said, your apnea will wake you up, you don't need an alarm going off too. You can't expect to have good sleep after surgery. He is a nice doctor so I don't want to say he was making me feel dumb or anything, but he was definitely bemused by my paranoia.

All I feel that I can do is keep him from coughing, not overmedicate him and try to keep him on his side. I don't think I am going to get anywhere requesting these kind of extra measures. There is probably a one in a million chance that he could die from this--I'm just terrified he will be that ONE. I can't help it. My imagination gets away with me.

So, all I can do is keep checking on him and try to tell myself I'm being ridiculous. If this were going to kill him (the swelling causing apnea) it probably would have happened in the first 24 hours when his airway was the most swollen and he was full of all the anesthesia and sleeping all day. That is why I never left his side for more than 30 seconds on the first day.

Keeping him from coughing by ignoring him is going a long way to settle the paranoia down a bit. So, thank you ECHO for that!

And to everyone else, thanks for NOT telling me I'm crazy!

jen