Lingual Tonsillectomy Complete

Thursday we left at 3:30am for 5:45am arrival/check in at Cincinnati Children’s Hospital

Urine sample done, gown on… waited for nurse to come in and place the IV 

She doesn’t love all the people standing around her and the tray of tools… it’s just intimidating. 

The child life specialist came in, and brought an iPad with a million games which helps…  

I mentioned we used lidocaine cream. They offered to do a jtip to put lidocaine under her skin - it has a flick to it but it helped with numbness for sure.  

It’s always hard to get her stick with an bc she can’t drink before it… they asked me about an ultrasound but I said if they think they can get it, go for it…

(…bad call on my part. Will always go with ultrasound in future…)

The first one blew… so that sucked.

They went to get the ultrasound.

And second time around she resisted a lot, tears, and didn’t want to do it again. I was able to hold her hand and after a minute or two she calmed and they were able to get it. That was so sad to watch.

We then met with the anesthesiologist and then with Dr. Knollman, her ENT. 

Dr Knollman is just the best… that is all. 

He speaks directly to her and just so caring. He then sits down and asked how MOM is doing. 

She went back for surgery about 8am 

At 8:30 they called with an update letting me know she was doing well, doctor had assessed both ears. Left ear hole in ear drum was still closed (this is recent, it closed in the past 6 months) and no fluid behind (YAY!) so no need for tube at this time. We will keep monitoring it with audiologist (tympanogram every 6 months) and our ENT appts. 

Right ear still has huge perforation - only about 10% of an ear drum left -- she will need a complete tympanoplasty at some point. We have not yet been able to discuss that, not even on radar, due to the recurring sinus infections which are directly affecting the ears (it’s all connected) 

It's our hope that with the sinus surgery in June (reducing turbinates and opening the sinus cavities in the cheek area) and now this surgery she will be able to more effectively and efficiently clear infections -- also working on immune system dysfunction with her MAPS dr 

If we can keep her ears clear and healthy, we can potentially discuss the tympanoplasty in years to come…

Other option is we leave it “as is” and monitor it to keep it healthy as we have been thus far (don't want any infection, moisture, or debri harboring in there) 

Paige popped out of anesthesia quickly this time around. When asked what she wanted to drink, she told them “Chick-fil-A” 😅

She settled for Gatorade, and immediately asked if Lainey had a surprise for her. (The night before she asked Lainey if she was making her a basket - she knows her sister well and sure appreciates her!) 

Within 10 minutes they called transport and we were headed for her room. She was emotional when she realized she wasn’t going home, but we got her in her bed, movie selected and Aunt Missy Door-dashed Chick-fil-A to hospital so she was set. Before that arrived she had eaten strawberries and sweet potato fries and drank two 6 ounce gatorades! 

She was not skipping a beat with eating and drinking and that was wonderful to see. 

She did tell me more than once, “I miss my people, I want to go home.”

I kept telling her ONE sleep and she would be home tomorrow. 

We had been told she could go to a play room, and by 2pm she had watched two movies - I wanted to get her up and moving, engaging with something… 

Unfortunately, since during her last hospital stay they had cultured her sinus/ears and MRSA came back positive, she now had that in her chart and was to be kept in isolation until that was removed. 

Soooo you can imagine how that went over for her when she was ready to go play and then was told “Nevermind, you can’t leave your room” … SAD 😔 

Child life did bring her playdough, painting, crafts, KPop coloring - so that helped make up for it. We did that together and then made some FaceTime calls (sometimes that makes things harder bc she misses her people but she seemed to do ok this time).

She was exhausted but not interested in napping all day, so by 7:30pm I had her cpap hooked up and got her to sleep! (I could barely keep my eye open so truthfully it was as much for me as it was for her!)

Night went as well as could be expected with getting vitals and Tylenol/motrin every 4 hrs — she took it all in stride. Doctor made

rounds at 5:45 am and we just needed our paperwork for discharge… she got dressed, ate breakfast, took her supplements… I unhooked her all but removing the IV line, and we waited… finally at 9:45 we were able to leave. 

She slept an hour on the way home… I could not wait to do so myself. 

She had continued to eat and drink like normal - it’s rather AMAZING, really. She’s been herself and doing all the things she usually does (minus running in a XC meet/cheerleading) - fully expected her to be on the couch or at least into eating soft foods for days 3-5 (warned those are the worst for recovery)… nope. The only challenge has been getting bowels back “online”… 

I was on it with magnesium even before leaving the hospital and it still has been ROUGH… 

Mag, vit C, lots of fluids, walking/movement daily, suppository, massaging… could only get small amounts 

Nowhere near a release of 4 days worth of stool… 

Added in senna Monday AM and PM and aloe juice on Monday night and Tuesday morning — FINALLY got the movement we needed! 🎉 Anesthesia is hard on everyone’s bowels — add in low tone and slow gut motility and it’s the perform STORM. Such a beast. 

Thankful for other mommas helping me get through it and keeping us out of the ER.

Now we wait and heal for the next 4-6 weeks then the next step is schedule a sleep study to see if there’s good news/big change… with the hope being her airway is open enough to no longer need the c-pap. 

However, I’m well aware that with Down syndrome we are also battling low tone and the tongue potentially falling back so it just depends how MUCH these tonsils were playing a role compared to those other challenges. 

We certainly are praying for things to go her way this time around 🙏🏽 and welcome you to join us!!

She/we have been SO blessed by your prayers, support, love - thank you for joining us in the journey.