It started last week. He started complaining of headaches. That in itself is not that big of a deal. Jay is a sensory kid and things affect him differently. Too much noise, strong smells, bright lights… all can lead to headaches. But then Grace started complaining of headaches too. Then on Monday night Gracie got sick… really sick. I kept them both home from school. By Tuesday afternoon Grace was bouncing off the wall… as good as new. Jay was not. Grace returned to school on Wednesday and after waking up with a 102.7 fever we took Jay to the pediatrician who gave him a Strep test that came back negative and dismissed us saying it was just a virus that would run its course.
Saturday Jay woke up with another fever of 102.7 and he was complaining his throat hurt so bad he could not swallow. We bundled him up and off to urgent care he went. This doctor administered another strep test which came back negative and then shrugged his shoulders and asked what we wanted to do. Jay told him how he wanted to be better so he could go Trick or Treating, so he prescribed an antibiotic and off we went.
By this time my mommy senses were tingling. I knew something was not right but could not put my finger on it. Hubby said to give it time, let the antibiotic have a chance to work. But when he woke up on Sunday with another fever in the 102 range and not wanting to eat because his throat hurt so much I knew I had to do something. SO once again we bundled him up and to the ER we went.
No longer was I going to be the nice mommy. I was the mommy who was not leaving until I had answers. I told the nurse that I wanted them to do whatever test they needed to do to figure out what was wrong. She looked at me a little strangely but she was so nice. She talked to Jay, really talked to him. Asked him to explain how he was feeling and believed him. She pulled me aside and asked if Jay was on the spectrum. I said he was. She said that she had a nephew who had Aspergers. I breathed a sigh of relief… this woman got my boy. She said she understood how a headache or pain that might be a 3 or 4 on a 10 point scale to us could seem like a 9 or 10 to my boy. I shook my head. She said not to worry that she promised to be our nurse and would look after us.
At first I thought she was just being nice, then after meeting the doctor on call I realized why she said what she did. This woman had no clue how to deal with kids on the spectrum. Oh she was a good doctor… she knew her stuff and ordered all the right test and all but she just did not get Jay and at times I think she was even getting a little annoyed by him.
For example she needed Jay to slide down the table and to put his legs down and lay back so she could lift up his shirt and feel his stomach. But she barked out all the commands at him so quickly and at once that he just sat there. She thought he was being difficult so she barked out the commands again. Jay looked at me so confused. He did not know where to begin. I finally could not stand it anymore and said, ” Jay would be more than willing to cooperate and do what you ask if you were so kind as to break it down into steps. He is not being defiant, he just can’t process what he is supposed to do first when you keep barking out orders at him. He is autistic, I believe it says it on his chart.” The doctor huffed and said something about forgetting that. To which my Boy… my precious honest wonderful boy said, “Gee mom maybe I should have worn my pin.Then she wouldn’t forget!”The nurse had to leave the room to hide her laughter. Even the doctor had to smile. My boy put her in her place. She was an entirely different person after that.
Several hours, chest X-rays, blood work, throat cultures and a breathing treatment later… Jay has Pneumonia! The doctor showed me the big black spots sitting in his left lung. How the other doctors did not catch this when they listened to his chest his beyond me. But the important thing is that we found out what it is, caught it before it became any worse and he is on the right meds now to treat it.
Treating it is an entirely different blog post. Getting the boy to take 3 different medicines plus breathing treatments several times a day… not so easy. But we are just taking it one day at a time… well one hour at a time really!
Jay pretty much summed it all up… “Mom I don’t get sick often but when I do… boy DO I GET IT!” He really is so much smarter than your average bear Yogi!