Sunday, August 15, 2010

holy crap! it's august!

so....i suck at this whole "updating" thing. where to start? carson's brain tumor scare? ella's preschool? global warming?
what, you want the brain tumor scare? geez, you're so needy.
so...on july 2 carson--oh, i'm sorry, Wonderboy--was diagnosed with mono. which, whew, because with my job, when your kid is sick and really lethargic and complaining of pain, you think OMGOMFGCANCERCANCERWHATDOWEDO???!!! But it was just mono! so that's ok then! except...he wasn't recovering. kept vomiting. still had headaches. i was concerned, but not overly-he tends to hyperfocus on symptomology until it becomes his whole world, all he can think about. so i thought, at first, he was just being dramatic. until my husband called while i was at barnes and noble getting him books to tell me "he went wall-eyed." which is, by the way, a higly technical, PC, and medical term. feel free to use it. so i rush home, stopping for a happy meal because he wanted a cheeseburger-he finally wanted to eat!-and i will say this now, with all sincerity, THANK GOD FOR MCDONALDS. because if he hadn't have wanted that happy meal, and it would't have come with that stupid perforated eye patch that normally drives me INSANE with the assistance it requires, what happens next would have gone unnoticed for God knows how long.
so i get home, and he's cross eyed on the left eye. it's completely deviated in. i do a neuro check, which is normal. vitals are normal, deep tendon reflexes are normal, everything. no fever. awake and alert. hungry for the first time in days. no nausea. so i feed him, and stew on it. he eats his happy meal, and puts the eye patch that comes with it in his eye...and here comes the drama. "hey!" he says excitedly. "Now i only see one of you!" shocked, i looked at him and asked how long he had been seeing two of me. he thoughtfully answered "since july started. or since the mono. i can't remember." WTF. i asked why he didn't tell the doctor, or me. "nobody asked me," he said innocently. "can i have yogurt?"
kids. you gotta love their pragmaticism.
so i sit on it overnight (foolish, foolish, peds nurse) and take him in the morning to see his ped. i also make an appt with an optometrist. his ped FREAKS. which is, you know, exactly what you want. he starts talking about MRI's and tumors. i completely shut that down...couldn't even think it. couldn't comprehend that the my child could be like the kids in the website from my last entry. then they tell me--on a tuesday morning--that they can't do the MRI til friday night. excuse the hell out of me? i went ballistic and told them no way in hell, it's today or we are being admitted to the hospital, ASAP. his poor, brand new nurse-it was her first day, i did feel bad--made some calls and got us in that afternoon. but then they mentioned two words that gave me some hope: pseudotumor cerebri.
and his optometrist said the same thing. "this looks like a classic case of pseudotumor cerebri," she said thoughtfully. "both optic nerves are swollen, and with brain tumors, it's usually just one or the other. i think his intracranial pressure is too high. get the MRI done to rule things out, but this looks like classic pseudotumor."
as in, not a real tumor. thank God.
so the MRI was awful. an adhd child strapped into a big scary machine with a rag over his face is going to freak out. so they weren't able to get all the pics they wanted. but enough to see he didn't have tumor. again, thank you, God.
we go to a neurologist the next morning. he echos the pseudotumor thing. "he needs a spinal tap." i look at him, not surpised (because OF COURSE i googled it), and advise him to sedate him. so we had to be admitted to the hospital and go to the PICU (what is it with my kids and the PICU in july? Jesus) and be sedated. where his ICP was >55.
Greater. Than. Fifty-freaking-five.
ok, so for people who don't know, normal ICP (or intracranial pressure) in a kid (or adult) is less than twenty. so his was three times normal. THREE TIMES. it literally sprayed out of the barometry device and all over my friend Nicole, who was his nurse for the sedation. Hope she likes mono!
holy rusted metal, batman. so they pulled off almost an ounce (AN OUNCE) of cerobrospinal fluid to restore the pressure, and now he takes a med twice a day to keep it from replenishing. it tears his stomach up, and makes him hairy, and he had a spinal headache for a week that was so awful he couldn't get out of bed and almost had to be readmitted to the hospital. but there's no tumor.
i just can't say it enough.
Thank you, God.

update: i really am so grateful that we don't have to do the oncology route that many of my patients and their families have to go through. like cora, or the children from the website in my last post, I Could Be Your Child. However, the parents of Kyrie Thome were not so lucky, and lost their little girl over Easter weekend a few years ago. Now they tirelessly raise money for pediatric brain cancer research, and come to my floor as the Easter Bunny and Frosty the Snowman to bring presents for hospitalized children who would otherwise miss out. Please, come to the walk in Wichita. Or donate to their cause. Every little bit helps.

No comments: