So incredibly anxious about my childs (5) upcoming adenotonsillectomy

[Debz93]

Hi,

My child has an adenotonsillectomy this Monday (5th Jan). She has enlarged adenoids and grade 4 tonsils causing sleep apnoea.

Im beyond terrified about the surgery. Im terrified of complications and risks, and the thought of her dying is really making my anxiety go haywire.

Its not helped when I've seen and heard about horror stories of children dying as a result of the surgery, due to severe bleeding etc. I know these are rare but my brain panicking about if my daughter will fall into the rare category.

I really need some reassurance and support. Its getting to be too much for my mental health but I don't want to turn the surgery down as my little girl as always struggled with enlarged adenoids and tonsils, and its caused so many issues for her, including sepsis at 11 month old due to Tonsillitis.

I know the risks and complications are rare to extremely rare. The hospital she's going to is one of best in the UK and deal with complex cases like my girl every day. The hospital said the risk of death is 1:100,000 to 1:1,000,000, and most likely complication she may experience is needing some support breathing, so oxygen. I hope she has no complications at all and if any arise they're at hospital, that way they csn deal with it and sort it out so she's okay.

Thankfully she doesn't have any major conditions or illnesses. Only risk factors she has is sleep apnoea, being overweight and controlled mild asthma. She is also diagnosed Autistic.

I know she needs the surgery, it'd be unfair to leave her suffering like she is. Im just struggling with the awful dark thoughts and anxiety.

So, if anyone can give reassurance or support, I really would appreciate it.

Edit: They're adjusting aesthetics so it wont compromise her breathing so much, and keeping her in hospital overnight with her surgery being one of the first, if not the first on Monday morning.

Replying at 3am as I'm up with baby.
DS had it at almost 4 and it really helped with his sleep apnea and tiredness. He was upset when he came round and then had pain at nighttime for about 3-4 days (but was fine in the day) so needed to keep on top of calpol.

It is honestly a very safe and very routine procedure and the younger they have it the better for recovery. They cauterise the tonsils to minimise bleeding. Do you usually have anxiety/ health anxiety? Have you had a pre op phone call so you can talk it through?

When I was young, nearly every child I knew had had their tonsils and adenoids out by the time they started junior school. None of us had any side effects. Unfortunately, my adenoids grew back so I had to have them removed a second time when I was 11. It was no big deal. Both of my children have had many surgeries since they were babies and every single one has been problem free in terms of anaesthesia etc. I'd suggest that you stop over researching the facts as it seems to be increasing your anxiety rather than relieving it.

Hi OP. my son is having this done on the 12th and I am not worried at all! this is not gloating but meant to be reassuring. It is an INCREDIBLY routine surgery (like 40k a year!). your daughter will be absolutely fine. the risk of living with sleep apnea is far higher!
stock up on jelly, ice cream, and calpol.
will you have someone with you while she's having the surgery? try to, and also make sure you take a book, podcast or trashy mag to distract you while she's in.
good luck :)

Also they have changed how they do the procedure since 20/30 years ago so there is even less chance of complications.

My son was 6 when he had his removed last year. I felt exactly same as you before his surgery. Do you know which procedure they are using to removal tonsils. If they are using Intracapsular it is much safer and less risk of bleeding. My son was fine after his surgery and I’m so pleased we had it done. There was a few days of pain afterwards but managed with painkillers and lollies/drinks.

My son has had 25 operations and I still get scared. However if statistics is your thing, the most dangerous part of a minor operation is usually the drive to the hospital. It's the unknown part that's scary.

Thank you for your comment, I really appreciate it.

So glad your little one recovered fast and hope your baby is okay.

I do have anxiety and health anxiety alongside Autism and ADHD.

Ive phoned preop team and we had a one to one appointment with the anesthesist who was lovely and said Heather will be fine, and they explained how they're will be giving Ketamine and other similar meds which don't compromise breathing or out extra strain on heart and lungs.

I knoe the chances of anything going seriously wrong is extremely rare, but yeah .y anxiety is a lot at the moment. I also feel so awful for those little ones who have passed due to complications from the surgery, and hope more than anything my little girl isn't amoung them. Im sure she isn't, its just my anxiety being a lot.

I had this operation aged 4 and so did my daughter, coincidentally. It is very very routine and once you get to the hospital, it doesn’t feel like a big deal at all. We were both so much healthier afterwards, so it’s well worth it.

Yeah inhad mine out as a kid. Tonsils at 5 with grommets and adenoids and grommets at 10/11. I was completely fine myself and I know its one of the most common procedures going.

Ive stopped looking at horror stories and statistics as like you've said, its not hwloung my anxiety at all and i refuse to make myself worse.

I know my anxiety will be the worse thing of the whole procedure and I am adamant not to let it interfere as me girl needs me.

Thank you for such a positive and lovely comment.

We have loads of ice pops stocked up.

My partner (my girls daddy) and my mum will be with me whilst my girl is having her surgery.

Ive got a few things to try and distract me whilst she's in surgery. My mum will keep me occupied lol

I hope your kiddos surgery and recover go smoothly

Thank you for your comment.

Im glad your little one recovered well.

Im sure the surgeon said there was a risk of tonsils and adenoids growing back so I suspect it'll be the intracapsular technique which is even more reassuring.

Im sure she'll be fine and recover well. Im just a very anxious person and even more so mummy.

I think you've just said it for yourself, that your little girl needs you. She needs you to stay calm and in control. Hopefully without a worried expression too.
Good luck. I'm sure she will be fine.

Im sorry to hear your son has had 25 operations. I hope hes okay.

Thank you. The anesthesist said the same thing, and the leaflet we've been given says the same with chance of death being 1:100,000 to 1:1,000,000.

I know they are reassuring statistics but my brain goes to panicking that she'll be one of the rare one off cases. I know its silly to keep thinking that way

Absolutely. I can easily manage how I present and act in front of her, and give her reassurance.

I appreciate it. Im sure she'll be fine too. I'm not allowing any other option

The most danger your child will be in is driving to the hospital.

From the other side of the fence I had this done at age 5 and the only things I remember were having ice cream and jelly babies afterwards! Also I didn’t have to go to school for two weeks. So from a 5 year old perspective not a bad experience at all!

Absolutely, and i will keep reinforcing this idea. Especially given how cold and icy it is, driving there may be even more of a challenge. Surely if we can do that without harm, her surgery will go even more smoothly. That's the narrative im playing

Oh definitely.

She'll love staying at home, playing and doing arts and crafts with mummy. She'll enjoy binging her favourite films and series too.

We got a few new books, colouring pens, colouring books and play dough.

We've been talking about plans of going to the cinema and play area sfter the 2 weeks of recovery 😀

I’ve had this op myself in about 1979 and my dc have had 5 ENT ops between them from age 1 to age 4. I just wanted to say that I completely understand how you feel and sending a handhold.

These ops are very routine but scary for us mums. Take something to occupy you while you wait eg something to watch on your phone and headphones. Put sweets in your bag so you can quickly have one without being spotted if you are low on energy, as of course can’t eat in front of them while they are nil by mouth. I sneaked off round the corner to eat them.

Three practical points. If they let you come to the area where they put them under, just do a little emotional preparation for how you will feel when you see that. I hadn’t realised they would look unconscious and I would like to have been told that. They are of course actually all good and ready to go down to surgery!

Also be aware the staff will not usually get you after the op until the child is awake as they stay under nurse supervision in recovery until that point. I had told mine that I would be there when they came round and wished I had realised I wouldn’t be. After that experience I told them for future ops “when you wake up the nurses will be looking after you and then you will see mummy”. They were happy with that!

As a final point, with the 5 GAs the experience as they come round has been very different each time. Sometimes they have been relaxed and sleepy. Once or twice tearful or shouty. This is completely normal apparently and a side effect of the GA. Again I wish I had been told this as it would have been reassuring to know that occasionally happens and passes quickly!

My kids remember their experiences pretty positively and are quite proud of their surgeries! I remember being given ice cream when I had my tonsils out!

I hope it all goes well and will be thinking of you and her.

Just thought I would add that spaghetti hoops with grated cheese on top was a favourite with ds after his most recent operation.

My DS had a tonsillectomy when he was almost 4. Once he was under anaesthetic, the surgeon could see how big his adenoids were so they got whipped out too.

All the medical staff doing their endless (and welcome) pre-op checks that they had the right child in for the right procedure all said "has he had lots of tonsillitis, then?" but in fact he hadn't.

It was the sleep apnea and heavy snoring that was the main problem and he had sounded like Darth Vader since he was a baby!

As part of my parenting due diligence at the consultant appointment I did ask what the alternative to surgery and GA would be. The reply was that without surgery it would continue to place strain on his heart and lungs as his tonsils were very large and obstructive. So that was that for me.

He had a very high and squeaky voice for a few days afterwards but recovered well. His daycare nursery mentioned a few weeks after he was back that he was now talking a lot more while out on walks and outside activities.

I hope it went well today OP if she’s already had the op. Please keep us updated if you would like to.

My DC had this fairly recently at age 4 due to sleep apnea. I was similarly anxious to you OP. The recovery was actually worse than we thought, he had two minor injuries as complications and he did have the extra capsular/traditional surgery - so his pain levels and subsequent distress were high from around day 3 or so until about day 10 or 11. Then he finally turned a corner rapidly and by day 14 was fine. He woke multiple times a night in pain and distressed for about the first 10 nights. That's all whilst we kept on top of regular paracetamol, ibuprofen and morphine.

However, the surgery completely instantly cured the sleep apnoea and we started seeing changes in his behaviour within a couple of weeks of recovery. It was definitely the right decision for him.

Hoping all goes well with your DD OP.

Hi,

Thanks for keeping in touch.

Its now been 37.5 hours since my DD had ber Adenotonsillectomy surgery.

The surgery went well with no complications which was such a relief. She was distressed and in pain upon waking in recovery, requiring 2 doses of Morphine half hour apart. Surprisingly she wasn't sick, I was expecting it.

Shes picked up a lot and seems more like her old self but just moved tired and in mild pain, but we're being extra vigilant with meds, numbing spray, drinking, resting and eating as advised and instructed by the nurses and doctors.

I have also been monitoring her oxygen, heart rate, temperature and blood pressure, with checking her throat every time I give her medication. Im being hyperventilate which gives me peace of mind, aa well as being able to detect any issues early on.

Its still early on and my anxiety wont settle down regarding this until shes fully recovered.

I hope i can continuing to post positive comments throughout DD's recovery without any complications.

Roll on 2 weeks when I know shes safe from complications.

@Debz93 I’m so glad to hear she is out and doing ok. I hope you are able to eat some meals and take some rest yourself. This is all exhausting for us as mothers. Try to rest up as much as you can when she is asleep.