after months of dealing with unexplained sickness, oncologists, infectious disease specialists, countless tests, pokes + prods, CAT scans, ultrasounds, scary MRI tubes.. finally, our amazing rheumatologist offered a diagnosis of PFAPA.
here we are, almost a year later, with high hopes of permanent relief from these exhausting fever episodes and terrible symptoms that come along with them. kids with PFAPA eventually outgrow this disorder, but with Jolie starting kindergarten in the fall and her fevers actually getting worse and more frequent, her rheumatologist recommended that we move forward with getting her tonsils and adenoids removed. we scheduled her surgery at the end of January. I remember feeling like March 8th was forever away but it came quickly and finally the day arrived! after weeks of hyping her up about the surgery, talking her through it, attempting to help her understand what she could expect, she woke that morning with some confidence that everything would be just fine.
I made the mistake of not fully explaining what was going on during the time of all the scary tests and doctor’s visits last summer, simply because I wasn’t even able to process my own thoughts and feelings to relay them to her very well. when someone tells you that your daughter has cancer (Jolie’s oncologists suspected she had lymphoma because they discovered her lymph nodes to be abnormally small as well as abnormally enlarged), it will completely rock your world- emotionally and physically. I didn’t want to make that mistake again about having her tonsils and adenoids removed, so we talked about it often. the night before the surgery I talked with the pediatric anesthesiologist and he assured me that Jolie would be asleep before they did anything with IVs or “shots”.. I wish I would have recorded the jumping for joy in Jolie when I told her there were “no shots” for the surgery.
the surgery center where we went allows the kids to stay in their own clothes as long as its a two piece without feet, so we picked out special surgery jammies, went and got our nails done to match, and when we decided to color the girls’ hair, we joked about how her doctors would LOVE Jolie’s pink hair! I was doing my best to make this into something more fun than what it actually would be.
Jordan was at the fire station the night before, so the girls all piled into the bed with me. the twins stayed up a little later so Jolie could eat something around 11pm since her surgery wasn’t until noon the next day and she wasn’t allowed to eat anything after midnight. BB picked up Baker and Brady around 9am and we took Parker along with us. Jolie was much more confident with her twin sister there! sticker books and crayons kept them busy while we were in pre-op. quick prayers over Jolie before they took her back.. they had given her “silly juice” in hopes to help her chill out. which worked, but when the nurse came by for finally preps and checks, tears started rolling down her face. the sweetest anesthesiologist handed her his stethoscope and the tears stopped and she was feeling pretty good. when she was getting rolled back she popped around to wave when I snapped this picture. Parker was sobbing because she was worried about her sister. which of course made me cry. looking at this picture makes me tear up, actually. my brave girl!we waited about a half hour before we were given an update- everything went perfectly! her tonsils were much larger than they thought they would be! we got to come back to see her after she started waking up. sweet girl was so groggy, coughing a little, but doing great! Parker immediately asked if she could get into the bed with her. once Jo was awake and able to sit up we let Parker crawl up there with her and eat a popsicle. they wouldn’t let us leave until she had eaten one, so I was glad that she was ready pretty quickly. her IV was in her foot, so before we left they finished the bag of fluids and took her lines out. I was seriously impressed with how well she did coming out of surgery! when Baker got her ear tubes she came out of anesthesia REALLY angry and screaming. so I was worried Jolie would be the same and kind of prepared myself for the worst. but she did great.
we left the hospital around 2pm and stopped on our way home to get her prescriptions and get some orange sherbet, per Jolie’s request. she slept the entire time we were in the car and after we got home until around 5pm she woke enough to eat. Parker didn’t leave her side. she napped when Jolie napped and ate when Jolie ate.
Jolie’s throat was pretty swollen so her voice sounded weird and made it difficult for us to understand her- she didn’t talk too much the rest of the day and didnt complain about the pain much either!we were instructed to give her meds every three hours, alternating Motrin with the pain medication, for about 5 days and as needed for the next two weeks. Jolie also has to get in about 42 ounces of fluids, so I’ve been doing my best to keep up with what she’s drinking and how often. she did awesome through the night, lots of snoring because of the swelling but otherwise she didn’t complain much at all. we’ve had some tears and we’ve also had a chatterbox that talks about 800 miles a minute on pain meds. she’s such a doll.
for now its lots of ice cream, popsicles, and soft foods! I’ve been told by other moms as well as our ENT that days 5-9 (when the scabs fall off) are a bit of a regression with the pain and discomfort, etc. so I’ll be sure to give another update in a couple weeks after were all healed up! the overwhelming support, encouragement, and prayers through this last year has been incredible. I cannot express my gratitude enough!! we felt the love and are so thankful.