A few months ago I wrote the world's longest Facebook message to a dear blogging friend of mine whose adorable rockstar little boy (Super Joe!) was getting ready to undergo a Tonsillectomy and Adenoidectomy. Seeing as Ellie recently went through her upper airway carving surgery back in April and my prior background as working as an ENT nurse practitioner, she thought I might have some good tips. Well, I don't know if they are good are not, but here they are. . .graciously reposted from her blog post on Cowgirl Up! Seriously, check out her blog.
As with anything I write here, this does NOT substitute medical advice given to you by your child's health care provider. If you have any questions, please contact your child's doctor.
"this surgery will be a breeze!" |
Tonsillectomy and Adenoidectomy Recovery Strategies for Children with Down Syndrome
1. The pain varies from individual to individual. It depends on how "attached" the tonsils are to the throat. Some kids have huge wonking tonsils but they just hang by a thread. Other kids have smaller ones (or large ones) but they are firmly adhered to the throat by a whole lot of tissue. You will not know for sure how attached they are until the surgeon actually removes them. As in, you cannot tell just by looking into the throat. . .
This is why some kiddos are bouncing off the walls two days later and why others (like my kiddo) moaned and groaned and laid around.
2. Hospitals have different rules around the US. Bear deserted (had low oxygen levels) a lot during sleepy time. 79-88%. She got to have some oxygen on over night. Surprisingly, they let her go home. It was up to the doctor and the thought was Bear was oxygenating low pre-surgery (due to obstruction from her honking tonsils and crusty adenoid) so let the poor kid recover at home. At CHOP, kids have to be satting at 95% without oxygen even when asleep. This can lead to living in the hospital for a few days. Honestly, if we had been at CHOP, we would still be there. . . okay I am exaggerating, but we would have been there a few days at least going bonkers. My advice is to charge the iPad, bring the charger, bring spare clothes because you just do not know how long you will be camping out.
She is watching Signing Time on the iPad. It was the only way we could keep the IV in and the electrodes on. |
3. The more hydrated the child is, the easier the recovery.
When the surgeon removes the tonsils and the adenoid, scabs will form. Keeping those scabs moist decreases pain. Hydration also prevents trips to the ER due to dehydration. Fluids include semi-solids too--think ice cream and apple sauce. I had the Bear chugging apple sauce because she wouldn't drink anything else. STRAWS--okay some docs say no to straws after T and A while others say no restrictions. (just as some say they can go to therapies when feeling better while others say no for 2 weeks).
4. The 5-10 Day Mark:
As with any scab, it will fall off--this occurs 5-10 days post op. When the scabs fall off, it hurts and there is a risk for bleeding. This why children often need an increase in pain meds. That being said, some kids are running around like wild banshees and you would never know that the scabs fell off.
As with any scab, it will fall off--this occurs 5-10 days post op. When the scabs fall off, it hurts and there is a risk for bleeding. This why children often need an increase in pain meds. That being said, some kids are running around like wild banshees and you would never know that the scabs fell off.
With Ellie, on day 6 she slept. A LOT. I think she was only up for 6 hours total. She also wouldn't drink. That was the only day she would not drink. That was the day she lost most of her scabs. She lost the remainder of the scabs after week 3 and I didn't even notice.
5. MUCUS or SNOT or DROOL or all of the above
It will be thick. Really thick. And copious. Surgery is surgery and as you already know, cutting into tissues is trauma and trauma leads to swelling and fluids. Expect to see some snot for several weeks post-op. Expect to hear some snoring as well--remember the swelling.
It will be thick. Really thick. And copious. Surgery is surgery and as you already know, cutting into tissues is trauma and trauma leads to swelling and fluids. Expect to see some snot for several weeks post-op. Expect to hear some snoring as well--remember the swelling.
6. Don't forget the iPad and spare clothes. A few sets.
Yes, I have mentioned this already, but it is important! You know what is fun? Post op emesis (vomiting). What is even more fun is dried blood post-op emesis. Right after you change into the bedtime clothes. Bring several shirts. Between the ice cream, the snot, the drooling, and the vomiting, you will want something semi-clean and non-smelly to sleep in. I learned this the hard way. The iPad is so that you can google everything that looks funky. Or to play Signing Time over and over and over again.
7. This may be the most important one for pain and recovery: CHEW CHEW CHEW.
I know this sounds strange, but you want to keep the jaw, cheeks, and neck muscles loose and relaxed. Especially the neck. Tensing up will increase the pain. Relaxation helps with healing. Gummies, fruit snacks, whatever to move those muscles. I avoided all red items--red juices, red pedialyte, red gummies, red jello.
Ellie Bellie Bear's TandA posts from April:
Beauty Sleep: Tonsils, Adenoids, and Ear Tubes-Obstructive Sleep Apnea and Chronic Sinusitis
A Somewhat Rough Recovery-tonsil and adenoid removal
A Few Bumps in the Road-Pnemonia
Wow! What a timely post! Elijah just had his "carving surgery" today! Things went well and we were able to come home around supper time. Great tips! I would have never thought about keeping the neck/jaw muscles relaxed though. We will definitely do that. Thanks so much for sharing!
ReplyDeleteGlad to hear the Elijah's surgery went well! Hoping for a speedy, pain-free recovery!
DeleteI cringe just thinking about this surgery. I swear I have dreams where Cora's adenoids grow back and she has to go throug it again. Although, I have heard that the recovery for adenoids alone is easier. Great post. The one thing I wish the docs would have told us was just how painful it can be, and how you can often have to deal with pain management for up to 2 weeks. It was no fun at all.
ReplyDeleteI have gotten my wisdom teeth removed in the sixth grade. Ice cream and hot soup expedited my recovery.
ReplyDeleteThanks for these tips. I had my T&A's removed when I was four and had low oxygen too due to my trachea closing up a few days before surgery. This was really the reason I was in the hospital. T&A surgery had already been scheduled at another hospital but Children's Hopspital resceduled it to be done there sooner while I was there anyway. I got home four days post-surgery.
ReplyDeleteAlthough this has been a while ago, and I read your blog about Ellie's journey through her tonsillectomy I came upon this when searching google for "my toddler with Down syndrome had a tonsillectomy and now will not eat or drink" haha. You have given us hope and that is what I needed. We are on day 1 of recovery and it is a struggle! The Tylenol and Motrin flow from her like a volcano, exploding as soon as we get it near her mouth. She says she wants to eat but anything that comes near her mouth is rejected at first sight. I have a very picky eater, and this has made the situation that more difficult. I have invented foods today full of sugar and sweetness, tried to give her juices we would never buy, even offered her SODA! SODA! Anything to get her to drink, but all to no avail. I am also a worry wort, wanting them to keep my daughter for at least a night but what could they have done. They could have done IV liquids but she needs to get some cold and refreshing liquids down that throat! After reading over your tonsillectomy posts we have hope. We know this won't last forever, but honestly she was bouncing around faster after her open heart and kidney surgery. With this one, she doesn't have her comfort, her sippy cup with milk :(
ReplyDeleteHopefully she will recover soon, and realize that this pain, will help her to have less pain later on! Thank you again!!!
God Bless
Jessica, Brynny and Aolani Bason
Hi Jessica! How is baby girl doing? T&As are rough on the kiddos. They just don't understand that if they drink, they will feel better. Hoping and praying you are all over the hump and that she is healing well.
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