I am … a Survivor.
October 2014 our lives would change forever. My son (who was 5 at the time) at bed time all of a sudden had a horrible headache, started vomiting and was falling to the right when he tried to walk. I didnt think too much of it, just got him calmed down and to bed. The next morning he was really lethargic, still had the headache, was dizzy, falling to the right and vomiting. Took him to our local ER. The doctor looked at him (no real exam AT ALL) and said “he has the flu, we’ve been seeing a lot of kids already with it. We will give him zofran and tylenol and if he isnt better in a week take him to his doctor”. When i tried asking about why he was falling to the right and why his feet were FREEZING, the doctor told me “he has vertigo. Hes walking, so i am not concerned”. Then he sent us home. I knew it wasnt right but i figured he was a doctor so maybe i missed something. Xman slept all day long and all night. Wouldnt eat and just laid there when we could get him into the livingroom. The next morning (almost 36 hours after initial symptoms) i took him to an ER about an hour from our house. After reading the symptoms on the sheet at intake, they rushed us back to triage. The triage nurse took one look at him and said “we need a bed and doctor now, dont worry about the patients in the waitingroom” then she looked at me and said “you were right to get him back in!” The doctor came right in and talked with us and then examined Xman. Then he said he was transferring us to the local childrens hospital because they were not equipped to help us. He got testing done there and with him being a child he had to be sedated. The MA that wheeled him back into his room after recovery says “he is having a hard time waking up, but that is typical with STROKE patients”. My husband and i just looked at each other because this was the first we had heard about him having a stroke. The doctor came in and called us out of the room and confirmed what the MA said. After lots of testing, the imaging at Randall showed that my 5 year old had 8-10 strokes. More imaging to find that he had a Vertebral Artery Dissection that caused the strokes. It took all i had to hold it together, but i knew i had to…for the little boy that was laying in the bed trying to wake up from sedation.
A week later we were sent home with referrals and appointment after appointment along with a prescription for Aspirin. It took a while to get him back into school, and we started out slow. Doing only half days. One month later he was just strting to get back into the swing of things when i got a phone call from the school nurse. “Xavier is saying he is dizzy and he is just kind of laying his head on the desk”. So i grabbed him from school and took him to the doctor. I noticed he was falling a little again but dizzyness is not something i was told to watch for when leaving the hospital the first time…i should have known. His doc looked at him and said “i think you should go down to Randall to get imaging done. I see what you are seeign as far as him falling a little and i just want to be sure”. Right after leaving the doctors to make the 1.5 hours trip to the hospital, he started vomiting…then i knew! Sure enough, he had another stroke. This time only 1, but that was enough to land us in the hospital for another week. More appts and referrals and a prescription for Lovanox and we could go home. He was on LOvanox for 8.5 months, seeign the blood doc every few months along with getting imaging done every other month in Seattle with the ONLY Pediatric Stroke Neurologist in our region. All this time, NO PE, NO recess….basically, he couldnt be a typical 5 year old boy. Just before the end of the school year, his doc says…”no more blood thinners but you have to take aspirin instead!” Xavier was so excited, even yelling out the window as we drove down the freeway “NO MORE BLOOD THINNERS!!!” people looked at us like we were weird. Life went on, he was being a normal boy and ended up with a broken elbow growth plate (the kind you only get to work on 1x in your career, according to the surgeon). He gets sick all the time, its almost liek he has no immune system. Whatever is going around he gets 10 fold. Even ending up with Strep and MONO at the same time (which his pediatrician says is unusual). I keep telling my son this is not the kind of over acheiving we want! He ended up back in the hospital a few months after the surgery with a TIA, so he is back on blood thinners (going on another 6 months) until we get the results back to his Aspirin Resistance testing. He is now 7 and has had Neuropsych testing done and found out his short term memory is not very good and he has ADHD now along with ODD. As far as motor wise, he has regained MOST of his strength back (although he has issues with writing still and tying his shoes). It has been a crazy and scary journey.