I’d like off this Medical Mystery train…

medical mystery

Another day another doctor here. On the evening of September 25th our youngest son, Cole, was petting our dog. It was past his bed-time and he claimed he could not get up from the floor. It was 9:30pm and a school night. “Cole- seriously go to bed!” I firmly stated. He said “I can’t get up.” Me- “Harumph! I said GO TO BED!” He stretched and moaned and groaned. He belly ached like his nickname so aptly states “Cole quit acting like the ’90 year old man’ and GO TO BED!”

My husband, John, took the limping boy up to bed. Unbeknownst to me he diagnosed our son. “Cole you are like Gronkowski (we are Patriots fans and apparently Gronk has this wrong with him) and you must have a groin pull.” So the kid goes to bed with the knowledge that his pain is warranted due to a groin pull. I have no freaking clue that this conversation even went down.

Tuesday September 26th- band drop off day and like every Tuesday you drive into the car loop- you hope your kid flies out of the car. You wave to the band teacher and you drive away. Do you LOOK at your kid limping into the school. NO – you do not or if you did you’d be at the doctors by the time it opened. School is over Tuesday afternoon and you realize that you need to walk and pick up your son as it’s band day and he can’t carry his chrome book, lunch box, back pack, and trumpet all by himself. You walk over. The usual corner you meet him at- he’s not there. You keep walking to see him crossing the street dragging his right leg behind him. In horror you exclaim “Cole are you OK?? Did you hurt yourself in GYM?!” And the kid responds “NO MOM! I am HURTING just like I WAS THIS MORNING!!! My GROIN PULL is KILLING ME!!!”

Ok “Wait what?!” and within minutes you are helping the boy hobble home carrying all his stuff and manage the dog on her leash and a phone in one hand calling the doctor. That began a nearly doctor a day visit til yesterday Friday October 6th. We saw primary docs, Orthopedic docs, Infectious disease docs. We had X-rays, MRI, more x-rays, bloodwork and other tests. Yesterday afternoon we had our 2nd opinion at Lurie Children’s Hospital of Chicago. It did not go well in my opinion. Dr. Sagan was lovely and the staff was amazing. What she said is what did not go well. “Well I see they are looking for Avascular Femoral Necrosis.”  “I’m sorry what is that?” She went onto explain that the MRI we had was “less than optimal” and that without contrast dye the MRI was essentially useless in diagnosing this condition. Avascular Femoral Necrosis meant that blood supply had been lost to the Femoral bone and that when this happens the head of the Femoral bone (the one that is in the hip socket) dies and you present with groin pain and inability to bear weight.

Ok- so is this bad? YES. Does it get better? YES. BUT- it takes time- and really she would not go into a care plan or anything except to say that if in 2 weeks he was NOT better or if he got worse (call sooner) she would be doing an MRI with contrast dye in the city with better scanning and another “diffusion” test done during the MRI which would 100% diagnose if it’s this condition.

So yeah- we are “puzzling” and “mysterious” to docs. He presents as a healthy child- no fevers, no malaise, nothing except pain deep in his groin on his right side. Pain in the hip and inability to bear weight. Oh and did I mention we are in PT twice a week and of course both appt’s are during school. That doesn’t much matter though because all the school missed he can make up any and all work during recess which he can no longer go to due to his wheelchair. Oh did I mention he’s in a wheelchair? Thankfully PT taught him how to use crutches better so he can use them in the house. Oh and did I mention that last night while picking up his older brother (age 14) from his Boy Scout patrol meeting that my car wouldn’t start and that the wheelchair and the car are now parked in front of a friend’s house waiting for us to get a tow this morning? Yeah- this stinks.

So hopefully we can get the van fixed so the wheelchair can make it to school on Wednesday (long weekend- Monday Holiday and Tuesday teacher day). I really can’t take it anymore. I clean (use to eat) when I am stressed. I have lost 7lbs this week. I have a very clean house which is very ODD to the family. Housekeeping is NOT my gift so for it to be clean, tidy, and organized- it’s kind of shocking.

SO medical mysteries aside…our dog has been waking up at 3am most of the past week and I have the honor of taking her out and walking her (she has to pee/poop). BUT I cannot get back to sleep. She is splayed out snoring on the floor at this lovely hour of 3:46am and here I am talking to all of you.

So say a prayer if you pray. Send healing thoughts if that is what you do. Freakin’ consult the stars or talk to a guru. Just heal my baby please. He’s only 11 and really he has to STOP being THE 90 YEAR OLD MAN!


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