I feel like I’ve done everything I can for tonight’s pregame event.
1) cleaned the house, okay I scrubbed every floor, washed every dish, dusted places that I had forgot existed.
2) lined up help for both the Tot and for Maggie dog.
3) put out reminders not to give him food or drink after midnight.
4) called the nurse so many times she’s now promised to come to Christmas at our house this year, no kidding!
5) avoided any word from the Hero of what was to happen in the morning time.
Even when he mentioned “vacation” tonight at dinner, I just let him ramble on about what all he wanted to do on this made up getaway he had planned in his mind already.
Don’t fault me, I’ve been down this road at least 2 dozen times in the past couple of years ….you just can’t calmly tell him “oh, you’re going in for surgery tomorrow, it’ll be fine love!” NO! You don’t, that news would be a lot for any child to accept ….then triple that by a child with autism and add in a PANDAS patient! Not happening!
I’ve gone over all the risks of surgery, like I said above, the nurse has actually had to listen to my countless questions until even SHE has called back to let me know she didn’t realize the surgeon did this or that for a PANDAS patient. The diagnosis still baffles many including the medical world!
I don’t really know what an athlete would do in the wee hours of the night before a big race but I can tell you what we have done to prepare for this event.
For two years now, more than 730 days we have walked a walk with our child that started with an illness. The illness, strep throat, began to minimic other cells …the healthy ones and because of an immune system gone array, an autoimmune reaction occured that allowed those cells to cross the blood brain barrier which caused the inflammation on our Hero’s brain. We have spent the last two years going from doctor to doctor, traveled and was treated out of state by a specialist, done at least 8 rounds of bloodwork to date, purchased enough medication to require a small mortgage loan, and treated with more supplements than I ever cared to know about!
During all this time, our guy went from a happy, social, fun loving kid whom just happen to have autism …into a child we no longer recognised. His entire being changed …he was but a former picture of himself. Nothing about his personality was the same, he was plagued with anxiety and would scream for bandaids or anything to help stop his obsessive compulsive thoughts! He began having panic attacks so badly that I didn’t want to take him anywhere for fear it would hit him while we were away from home. He had tics, both vocal and motor tics that did not exist prior to the PANDAS. Along with all of that his academic abilites regressed. He quit reading and could no longer spell or do math. Lastly, he had problems controling his bladder and he would wash his hands over and over again out of a fear of germs!
All of these symptoms got better while our Hero was on a long term antibiotic treatment. At nearing the one year mark we decided to ween him off and see if his body could then handle sickness.
His supplements, herbal treatments and new diet worked for nearly six months before he came into contact with a strep infection. Every symptom came back within just a few days of the illness. Like anyone who runs a marathon, you learn the tough hills and how to get over them! For us, we knew to go right back into an antibiotic treatment again.
After one month on his treatments we went to an ENT consult about the Hero’s perforated eardrum. We had put off the thought of a second surgery, (the first one having been nearly two years to the new consult), after the PANDAS diagnosis in large part due to the worry of any new bacteria being opened up into the blood stream. The Hero’s ENT whom had been his same surgeon for ear tubes years ago, took one look at his tonsils and described them as “chronic for bacteria!”
After leaving that appointment our guy ended up with yet another sickness that lasted for three weeks. It was then that we knew we could no longer hold out due to any risks involved, we scheduled the surgery for asap.
Tomorrow brings runners to their meets with marathons to run. It potentially brings him to the finish line of a marathon of which he never asked to run!
Our child, like many show up at marathons every day. They battle their way over hurdles seeking the finish line!
We as parents can tie their shoes, suit them up and drive them to the race but we cannot finish the race for them! We can only watch and be hopeful of what lies ahead!