seventeen eighteen fevers in the last 12 months. He had 23 the year before. George was diagnosed with something called PFAPA. Periodic Fever, Aphthous Stomatitis, Pharyngitis, Adenitis Syndrome leaves our little man fevering at 105*+ for 3-5 days every 18 days. That’s 120 out of the last 730 days—16% of his last two years has been spent with a fever. Conservatively. Add in 1 day for pre-fever symptoms and another 2 days for recovery, and you are looking at 240 days or 33% of his life disrupted due to PFAPA. One third of his last two years has been spent sick, on the couch, attached to mom or dad, and feeling like shit. My poor baby.
We tried steroids to treat the fevers but they left him being a monster for a good week post fever. He hated the way it made him feel and we weren’t fond of the aggression. It also brought his fevers closer together so rather than fevering every 18 days, it was happening every 10. Then we tried a medication. But due to Covid, we could only get it in pill form. No good for a three year old. We trialed a preventative medication but it didn’t seem to help long term. We were at the end of our rope. Out of options said the doctor.
We could have his tonsils and adenoids removed. It would be an elective surgery as it wasn’t an emergency and he has no history of repeated infection. Those weren’t being scheduled for a while due to Covid. And we were uncertain with surgery for our little man. It seemed drastic. But then again, 40 fevers is drastic.
Then a month ago at his 4 year check up, the pediatrician mentioned his ears were full of wax again. I made an appointment at the ENT for removal and talked to Aaron about surgery for PFAPA. Funny thing. He ended up needing surgery in his ear anyway to remove a wayward ear tube. We were going to do a clean sweep. Get it all done at once. Making it one anesthesia event with one recovery would surely be easier on us all.
So today was the day. We woke him early and got him into fresh Buzz Lightyear PJs. He assigned mom and dad our super heroes and we were on our way.
I’ve said it before and I will say it again. If your child needs surgery, there is no place as kind as Lurie Children’s Hospital. As soon as they saw our superhero costumes, they brought George each of the action figures to play with. They never once even mentioned removing his costume. They even gave him a cape to decorate and bring home. Everyone was kind, gentle and thoughtful every step of the way.
So after flavoring his sleepy mask medicine with bubblegum, he was rolled away. Just about an hour later, he was rolled back in sleepy but well. His little whispers broke my heart. I hate that we had to put him through this not know if it was going to be a sure thing. We struggled with the decision. We didn’t want to see him in pain and were terrified of the anesthesia. But it works to effectively significantly reduce or even eliminate the fevers in 80% of the kids who choose to have the surgery. Our chances where good. Better than good.
Shortly after coming to the room, his IV was removed and he wanted to try some jello. Then a purple popsicle. Then finish decorating his cape. It seemed too good to be true. Very few tears were shed.
They say kids rebound fast. But I was not ready for this. Barely a tear and full of energy for his iPad and TV. And he wanted to eat. Specifically he wanted to eat McDonald’s. I tried to discourage him by offering a buffet of soft foods but he was adamant. I painstakingly peeled the breading off his nuggets and chose the softest of soft fries. I offered a cold chocolate shake to help keep the pain to a minimum. And he ate it all. Every bite. A couple hours later he ate a soft waffle. This does not seem normal.
And now he rests. The anesthesia finally caught up to him. So while the rest of us enjoyed a delicious pizza dinner sent by my BFF, he was passed out in his favorite chair. He slept through Theo screaming and McKenna shouting. He slept. And slept. And is still sleeping.
And healing. My god, I hope he’s healing. And I hope that fever number 18 of this year…40 since this all started, will have been his last. Almost exactly 2 years to the day and this nightmare may be over.