SOL22: Breaking The Cycle

George had 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.

During his last 🤞 cycle

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.

EXCEPT ONE

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.

waiting for our turn to go to the back

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.

working on his super hero cape while letting the sleepy juice kick in

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.

post surgery rest

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.

eating a popsicle to help with the pain
post surgery finishing his super hero cape

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.

post surgery wanting to eat Old McDonald’s

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.

resting in his very favorite chair

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.

George’s first PFAPA identified fever March 19, 2020
George’s last PFAPA fever 🤞 February 28, 2022
I am writing for the 15th annual Slice of Life challenge presented by Two Writing Teachers.

15 Comments

  1. I am so glad that he came through the surgery well. Poor little George has been through the wringer for the last couple of years, and I sincerely hope that the surgery fixes him and the fevers will stop. 80% success is very good odds!

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  2. Oh, I so hope this works for you. We thought my daughter had pfapa because she also got chronic, periodic fevers for 2.5 years. It was terrible. So I know exactly how you feel. It’s just terrible. I remember feeling so bad that I couldn’t do anything to help him. I remember he asking once (and she was only 3, “why am I always sick??” It broke my heart. I remember all of the stress of my husband and I missing so much work. I remember sleepless nights when she woke up burning up. I remember even once that she actually had hypothermia after one of her fevers broke. It was the strangest and scariest thing. Her temp went from 102 when we put her to bed down to 93!!

    We never did figure it out because the tests they did said it wasn’t pfapa. But she also started getting chronic ear infections and we did tubes and it was after the tubes that her fevers started to go away. So I have to believe it had something to do with that. But before that we were definitely considering the surgery your son had.

    Anyway, I truly hope this is the solution he needs. For all of your sakes. I hope he recovers quickly and never has another fever from pfapa. It’s interesting you wrote his last fever on here. I can still remember her last fever. July 2017. On vacation. I used to be able to predict when she would get them so I normally wouldn’t have scheduled something then but at that point they had started to stretch out.

    Lots of hugs.

    Liked by 1 person

  3. All year long I have thought of you, Karyn, and of course sweet George. Goodness, I just can’t imagine. What a little fighter! I love that you all arrived in your superhero get-up. Buzz Lightyear is always a fan fave. Praying for George. With 80% effectiveness, the odds are in George’s favor.

    Liked by 1 person

  4. Pingback: SOL 22: Getting curried away | Karyn In The Kitchen

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