3 yo ds needs tonsilectomy/adenoids removed, hints? suggestions?

[STARRYSKY]

Ds has been having trouble breathing at night for a while now, I put it down to a cold, but this last week his snoring and struggling to breathe became quite worrying, he also started only breathing through his mouth and I can barely understand a word he says.
He has also lost weight, but wasnt sure if this was a normal/growth spurt thing.

Last night he actually stopped breathing a few times and DP and I were awake the rest of the night, shaking him to half wake him every now and then...

Took him to GP today who initially prescribed AB's and said tonsilitis, but I kept questioning it, until he said he was getting his "superior" in for a second opinion, the next doc had a look and wrote me a referral for the emergency dept , to be examined by ENT specialist.
He said that with the size of his tonsils he was at risk of an obstruction!

So I headed off for the FMC, had to wait around a bit but only really 2-3 hours in total. we had 4 docs come in, they all had a look and said no wonder he cant eat anything, there is no infection but his tonsils are that large they are touching at some points.
They reassured me that he would wake up if he couldnt breathe, try propping him up to sleep etc.

Now on a 30 day waitlist for him to have his tonsils out ,he is 3, he quite likes doctors and hospitals but I'm really worried about how he is going to cope, also how I am going to cope!
They've said he will be in overnight,I didnt even ask if I can stay with him! I will be allowed to, wont I??

Any tips or suggestions from those of you who have been there, done that?

Thank you

[lilima]

DS was 3. Have to say recovery was not fun. I was very honest and told him what was happening. He was very brave. Was quite sick for a couple of weeks following. One thing I did do was buy rectal panadol, as he would scream in pain trying to give him anything bar water orally.
Good luck.

[Raupe]

My little brother had the same thing when he was about 3. He also stopped breathing during the night. The surgery was a success, and he handled it quite well. Little trooper. I think it was more nerve-wrecking for mum than for him. Mum stayed with him in hospital. He was really quiet the whole time, but ate HEAPS of icecream . Apparently that helped cool the throat.

Sorry, no real advice here. Just thought I would share. After the surgery he slept MUCH better and wasn't sick as often any more (no colds, breathing or eating difficulties or anything).

Good luck to your little one

[STARRYSKY]

gah I am kinda freaking outa bit now, I am really not a fan of unnecessary surgery, I'm not certain that this is unnecessary....he really is struggling to breathe, he really has lost weight and will choke on ordinary easy to eat foods.
I have been reading that it is normal for 3-5 year olds to have enlarged tonsils... they get bigger in response to viruses, infection, allergies etc, they act as a filter for all the nasties...then at around age 8 they start to shrink back down...
I dont want to remove something from DS that is there for a reason IYKWIM?
But I would also like him to have a decent nights sleep (and me too!) and be able to eat properly and put some weight back on.

I dont know, we gave him a dose of nurofen last night, (for its anti inflammatory properties) but it didnt seem to make much of a difference.
I have actually been thinking allergies for awhile now, maybe I will get some zyrtec and see how he goes..

[Olive]

I'd chat with Ginger as her son had the same, she says it's the best thing they did for him! He's put on weight and sleeping better

[STARRYSKY]

Thanks Olive, I may just Pm her.

I have another appointment with the GP today, to discuss what happened at the hospital yesterday. I will sound him out for some short term tactics to try, if using zyrtec will be of any benefit etc..
We will see how it goes ...

[Ginger]

hey starrysky, I'm here. my ds1 had his tonsils out, adenoids out and grommets put in his ears all in one go last november. i was so nervous and scared, but the results have been amazing. it was seriously the best thing we ever did. he has put on 5kg since the operation. his speech, hearing, sleep and overall health have improved dramatically. he has only had one cold in the last 6 months.
we didn't find the recovery too bad- but the surgeon gave us a morphine type painkiller that helped enormously. i stayed in the hospital overnight with ds, we came home at 8am the next morning. please if you have any questions about it, just ask me. we are so glad we went ahead and did it.

[CeCe]

I have been reading that it is normal for 3-5 year olds to have enlarged tonsils... they get bigger in response to viruses, infection, allergies etc, they act as a filter for all the nasties...then at around age 8 they start to shrink back down...
I dont want to remove something from DS that is there for a reason..

DS was a possibility for removal of tonsils and adenoids if his ear infections kept up. So far, fingers crossed, we've been infection free for 2 months so it won't be needed.

I questioned the value of removing the tonsils much like you have above but was told there was a point that at times leaving them in can be more harm than taking them out. Our DS also has enlarged tonsils and adenoids. Our specialist said it can be more detrimental to development to be constantly getting infections due to enlarged organs rather than removing them. Our issue was ear infections though, rather than sleeping issues.

[STARRYSKY]

Thank you so much for shraing your experiences
I have just come back from the GP, DS was asleep so the gp was able to see first hand exactly how badly his breathing iS.
Acording to him, nothing is going to improve it bar surgery.

He is now advising us to go private, to have the op done ASAP.

Anyone gone that way? or have any idea how much it will cost? we do not have PHI, I have no idea how much, neither did the GP.

Or even any idea on how we can find out?
Thank you

[lilima]

Sorry. We had PHI, so not much help there. DS was the same. He developed Apnoea to the point that I co slept until the surgery as I was so worried.
I am not sure how much it would be full cost. You would need to discuss with surgeon.
You would be looking at surgeon, and possible surgeon assistant fee, anesthetist fee, and hospital fee, as you would most likely need to stay overnight

Surely if they thought t that bad, they would bump you to an urgent status for public?!

[The[cookie]Doctor]

HeySS.

I'm so glad you posted this as DS (4) is going to have his out soon too.
I don't think is as obstructive as your DS but he will have genetic predisposition for sleep apnea so it is another recommendation for why we are going ahead.
His sleep, snoring and mouth breathing is getting worse and he also suffers from horrendous bad breath which is believed to be caused by constant infection, colds, etc.

We saw a surgeon for a private consult (as per GP referral for enlarged adenoids) and the consult was $150 ($70 rebatable by Medicare).
We were told the surgeon's gap fee was $280 - I think that means $280 to pay the surgeon, without rebates from PHI. Im not sure now with all these other posts I am totally confused!

[~me~]

A friend had a quote to get it done privately as she did not have PHI either. She was quoted $4000 there abouts.
Another GF had her grandson done publicly and as he was put as a high category he was operated on very quickly. So check with your GP on the category system and the public hospital for waiting times.
She has noticed a huge improvement in all aspects of sleeping ans speech. She also said while they were on the waiting list it was nerve racking but OK as they knew it would be Ok in the end.

[Olive]

I'd say around the $4k mark too, the biggest expense is the overnight hospital stay,
I'll see how much DD's ops cost (PHI) but ours was just adenoids and grommets and no overnight stay.
I had an op last year with overnight stay and all up it was around $6k, we have PHI

[~me~]

Just adding that in case you were not aware, you can claim out of pocket eligible (this would be classed as eligible) medical expenses on tax. Once you hit $2000 out of pocket expenses, you can then claim 20c in the dollar after that of out of pocket medical expenses. I think this is the right amounts. You can go to the ATO website and get a better idea.
This would mean all out of pocket medical expenses for all the family once you hit the threshold.

[Olive]

DD2 last op, adenoids and grommets was $2241 all up

[Feijoa Mum]

My DS4 is due to have his out very soon but also get grommets put in and have biopsies taken on his infected nodes. I am not looking forward to it.
His has an aponea too, is a mouth breather, is very skinny and goes down very fast each time he gets sick. All his nasal,ear passages are blocked and narrowed because nothing can drain away due to his massive tonsils and adenoids - hence the enlarged and infected lymph nodes he has in his neck.
I am worried for him because although he has a very high pain threshold, history has told him not eating or drinking means it doesnt hurt but it also means he prolongs his recovery.
I wonder if they will set him up with an icecream IV

[STARRYSKY]

ah so, huuuge update ahead!

On Saturday night, DS woke up coughing so much he chucked up a few times, then proceeded to choke and go blue! he recovered pretty well, we sat up watching him sleep and trying to get him in a stable breathing position.
Sunday morning he was his usual self, the at about midday he spiked a fever and was just flat.
Knowing he had a pretty limited air way as it was, him getting sick was not what I wanted!! DP and I took him straight to emergency at the FMC. due to us having been there on Thursday we were seen too pretty quickly, no one took us very seriously so I put him to sleep, man did that wake them up!
we were admitted to the paed ward almost straight away (well..after they put an IV line in (oh my god did that suck! but I think I was more upset than J was) then put saline, AB's and steroids thu it!)
The nurses put him on an oximeter, he was having desats every minute or so, they freaked out and moved him closer where they could keep an eye on him, then even that wasnt good enough so they had a nurse just to sit next to him to move his position and keep the oxygen wafting on his face.
We were then informed that they were not confident that they could deal with his condition, so at midnight we were transferred to the PICU at the WCH, Jacob was pretty excited, we got to ride in an ambulance!
The staff at the PICU were so fantastic, I stayed the night with DS, thinking we would be able to go home the next day, but not so.
The hardest thing about this whole thing is that he really doesnt look unwell, no one will believe he is ill! but then they see him at night, asleep, struggling for breath and his oxygen levels dropping down lower and lower, yeah then they sit up and take notice!
The next morning we were transferred to a paed ward, which is where we still are now... he basically just needs to be on oxygen to be able to breathe at night. It is so scary hearing that alarm go off and knowing my baby isnt getting enough air to braethe
The steroids have been stopped now, his tonsils have shrunk from a grade 4 (touching in 3-4 places) to now a grade 3 +, he is still on AB's and they will not operate until all infection is cleared up (theyre saying around 4 weeks)
Tonight we have an oximetry study happening to gauge exactly how much his oxygen needs are, the docs are now saying that best case scenario we will go home on Monday with oxygen for him to use at home until the surgery.

I am so tired, so freaked out, so worried...we are in the best place for him now, but it is very hard with him being an active 3 yo during the day..will be back to update later

[briggsy's girl]

massive hugs Beck - this is just so scary! Hoping your little man clears up with the ab's asap so that at least you are able to relax for a little while until his surgery