This is a follow-up from Alden’s first post, Sleep Like a Baby: Toddler Sleep Study.
After a few months of doctor’s appointments and tests, our 22-month-old daughter, Neala, had her tonsils and adenoids removed, as well as her turbinates reduced. She was diagnosed with severe sleep apnea, and after her sleep study, we went to the ear, nose and throat doctor for a follow up appointment. They informed us that she’d greatly benefit from surgery and as she sat contently reading her books in the doctor’s office, he said, “Oh, yeah…we can really help that!” The “that” he was referring to was her Darth Vader breathing which I’d become so used to that I hadn’t realized that our definition of quiet and everyone else’s definition of quiet was completely different.
Surgery was scheduled first thing on a Wednesday morning. After we arrived at the hospital, they took us back to the pre-op area almost immediately and asked us a battery of questions, including Neala’s health history and family history, they weighed her (still not up to 20lbs. yet…), took her blood pressure, and measured her. The anesthesia team came in and explained some of the risks, and then our ENT came in and, cool as a cucumber, said she’d be taking her back shortly and that she thought it would take about an hour. The anesthesia team came and gave a dose of versed, and our peppy little gal started to sway and slur a bit. Shortly there after, she waved bye-bye and they took her to the operating room while we did our best to hold back our tears.
About an hour and 15 (longest 15 minutes of my life…since our NICU time) minutes later, the surgeon came out and spoke to us. She said the surgery went well and that she removed the adenoids, tonsils, and reduced the turbinates in her nose, a portion of the procedure we’d signed consent for but were not sure would be necessary until the surgeon was able to “get in there and take a look.” She said the adenoids were blocking about 80% of her nasal passageway and that her tonsils were basically touching in the back of her throat and looked like “giant meatballs!” I asked how old her youngest patient to receive this surgery had been and she said, “Nine months, but I’m pretty sure that kid was about the size of Neala.” She said she couldn’t use her “usual tools” because little Neala is sooo small! Before we were even finished talking to the doctor, a member of the recovery team came to get us because Neala had woken up!
Her little face was swollen and the hospital gown swallowed her. She was very upset and her heart was racing. I sat in the chair and put her on my lap with her head on my chest. Her heart rate lowered and her breathing slowed and she fell back to sleep almost immediately for another hour or so. She choked down some liquid Tylenol and we were then transported to our room on the General Pediatrics Unit where we spent the next two nights.
The big worry after surgery for a little one is that they can become dehydrated very quickly, so Nea had an IV to keep her hydrated. She was on Tylenol every 4 hours around the clock, and her vitals were being checked every 4 hours as well. She never required oxygen after surgery, which we were told was a possibility, and for that, we were thankful. When we first arrived in our room, she seemed to be almost her usual spunky self, but as the anesthesia began to wear off, it became clear that her recovery was not going to be a walk in the park.
She gagged and snorted each time she had to take the Tylenol and wouldn’t eat or drink anything. I do mean anything. Not ice cream. Not smoothies. Not milk. Not chocolate milk. Not water. Not juice. Not popsicles. Not applesauce. Not jello…She finally ate some watermelon and grapes and we were able to bribe her to drink water with a combination of her pacifier and pictures on our phones! We had to track every bite of anything that went in at all and somehow, by the end of the Friday after surgery, we’d hit some sort of minimum requirement for discharge and were sent home.
For a full seven days post surgery, our little Neala was not herself. She was clingy and whiny, constantly needing her pacifier, asking for “big hugs” (she is not typically our most affectionate child), not sleeping, not eating, throwing horrible tantrums complete with arching back, flailing, and clapping (who knew that was a thing during a toddler tantrum?), not wanting to play or read or dance (her favorite things). She wanted to be held constantly, except for when she didn’t…see not above regarding tantrums, and no combination of Tylenol and ibuprofen seemed to make a difference. We were so worried that the anesthesia had caused some permanent damage. Of course, our collective sigh of relief on day 8 was the only conversation we had about it, for fear that actually saying anything out loud might make it true!
On day 8, the meds seemed to finally be making a difference and, to our huge relief, her little personality and voice came back!
The Follow Up
Since her surgery, we’ve had a follow up appointment with the ENT team, which went really well, and we’ve had a repeat sleep study. The sleep study itself was almost as awful as it was the first time around, but the results were much, much better. During the first study, Neala had an average of 14 “apenic events” (she basically stopped breathing) per hour and she’s down to 1.5 per hour. She was also a bit congested the night of the study and was pretty uncomfortable due to all the wires and probes.
Our ENT team is happy with the results of the sleep study and we are so thankful that we moved forward with the surgery and didn’t wait! In the 6 weeks after surgery, Neala gained over two pounds! She’s always been a few pounds smaller than her twin brother and now she’s actually slightly bigger than him! She’s eating like a champ, and aside from the occasional milk or water coming out of her nose, seems to have fully recovered from the surgery.
There were a few things I wished we’d known going into the surgery and the recovery that could be helpful if you ever find yourself in a similar situation:
Bend your own rules to help recovery. Getting your child to take liquids is imperative for their recovery and required for discharge from the hospital. I had no idea this was going to be soooo difficult. We finally figured out that giving our little one salty (and soft) french fries was the only way we could make her thirsty so she would drink enough water. We almost never give our kids fried or processed foods, so this was a big deal for me, but it worked!
- Bring your own food and drinks to the hospital. Neala turned up her nose at EVERYTHING sent to us from the hospital cafeteria. She really didn’t want to eat or drink anything, but, aside from the french fries, she wanted to eat familiar foods. Our room did not have a refrigerator and I wish I’d brought a big cooler full of her favorite foods to have on hand.
- Take advantage of Child Life services if they’re available. The hospital where Neala had surgery has a great Child Life department and they brought us a continuous supply of books and other entertainment. They also brought us fun straws and several different cups to try in hopes that Neala would take more liquid. The day twin brother came to visit, they brought us a wagon to borrow so we could cruise around the hospital for a little entertainment. This was a BIG hit and we were so thankful for their help!
- Stay on top of the pain meds. Our little one was in so much pain when the anesthesia wore off that you could see it in her little face. We had to really stay on top of the busy nursing staff to make sure that she received her pain meds on time or a little bit early. We also started ibuprofen as soon as it was safe to do so to help reduce the swelling in her throat and nose. In the end, I realized she probably could have used something a little stronger but I didn’t know I could ask for other medicine.