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Absolutely gutted about my son's Tonsillotomy

2 replies

AelinAshriver · 07/03/2023 23:39

DS(4) has chronic tonsilitus and sleep apnoea due to extremely large tonsils. He was due a tonsilectomy and adenoid removal which was today.

20 minutes before walking down for surgery, one of the surgeons came to see us and said they'd like DS to have intracapsular tonsillotomy.

This is because he is only small and the risk of blood loss is greater with a traditional extracapsular tonsillectomy and more complications can arise as even a small amount of blood loss can be detrimental when he doesn't weigh much.

Also. Recovery time is only 1 week compared to the normal 2 weeks and pain during recovery is significantly less than the standard extracapsular tonsillectomy.

I asked about the risk of tonsilitus. The surgeon said it is reduced. He may still get tonsilitus but nowhere near the extent he has it currently and most likely won't need antibiotics to cure. It will be mild.

Having this information, we agreed to have intracapsular tonsillectomy and 10 mins later, DS went Into theatre.

Surgery went well. DS is great. Doing really well. Staying overnight as standard as he was a late afternoon surgery.

But I have now had a proper Google about tonsillotomy Vs tonsillectomy.

It seems without a doubt the best route for sleep apnoea. But findings are unclear with reoccurring, chronic tonsilitus. Which DS suffers greatly from.

I feel like he will have gone through all of this; (We have had such a battle to get DS this surgery, it's been crazy. I've had to fight and fight and DS has been so poorly and missed SO much school)
For DS to only continue getting tonsilitus and be constantly poorly again and it was all for nothing and then he won't get tonsilitus often enough to meet the threshold for a normal tonsilectomy and we can no way afford to get them removed privately. But he will catch it enough to miss loads of school and be in so much pain and distress. It's so heartbreaking to see him so poorly.

And he's only 4 and I understand recovery is easier when they're younger so if we do have to wait years to have them properly removed, it's going to be worse.

We've already been hospitalised twice in the past when DS tonsilitus developed into scarlet fever / pneumonia and needed IV antibiotics. And after his cannula and waking up in the recovery ward today.. he just understandably hates hospitals.

Why did I do this to him when I could have chosen the original standard to tonsilectomy and it's over and done with in 2 weeks.

Instead we have to flog it out for years with DS being so poorly again. I'm just so gutted. I don't know what to do. I wish I could turn back time.

I really feel like I've fucked up and let DS down.

OP posts:
BlueSeaWave · 07/03/2023 23:42

Oh lovely, you haven’t fucked up, you followed the advice of his surgeon. They are the ones who know what’s best and can recommend what happens and they wouldn’t have changed course lightly. It will suck if he keeps getting infections, but if you’re already under the surgeons maybe they can do it again, but helpfully this will work and evil google will be wrong. But it wasn’t on you, it was a medical decision.

Northernlurker · 07/03/2023 23:43

This has been a stressful day and I don't think you're thinking very clearly tbh. Your child has had a safer operation that's going to resolve one of his issues and v likely diminish the other to insignificant. He's come through the op fine, you're honestly in a good position. You've no way of knowing whether he will ever get tonsillitis again. He likely won't.

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