Sunday Avery had a great day. It was the first day he walked spontaneously and I really believed he was on his way to being well. What I later realized was I gave him his advil an hour and a half early.
By 4pm I could tell he was starting to feel bad. By 6pm I could tell the fever was back and he was really feeling bad. He was back to not being able to move without pain. At about 9pm he started having horrible shakes and his fever went up to 102.2, which was the highest it had been. He’d been on antibiotics for two days so I called the after hour nurse. She paged his Dr and called me right back. Said the Dr said he was concerned enough that he wanted him to go to Children’s and I needed to bring a bag. I told her we were about two hours away but as soon as someone got to my house to take care of Zachery we would be there.
Mike met us at the hospital. He was standing by the road so he could help me get Avery out of the car and into the ER. We walked into the hospital at 11:30. He was triaged and sent to the emergency department as a level 3. We waited until 6 am to see a Dr. After giving all the info to the resident, she ran off to find a Dr. At 7 am an attending walked up will all kinds of tests and ideas. We were admitted to the hospital and made it to a room by 1:30 pm Monday afternoon.
Since then he has had nasal swabs, throat swabs, blood cultures, skin swabs, 3 chest x-rays, 4 EKG’s, an echo cardiogram, 3 different kinds of antibiotics, 4 iv’s and dozens of blood tests. And with the exception of having the rhinovirus everything has been negative for infection. Some of his labs have been abnormal but they are ruling out so many really scary things.
So now eight days into a hospital admission and fifteen days since onset of symptoms I sit hoping to hear my son has Still's disease (Systemic-Onset Juvenile Rheumatoid Arthritis).
I say hoping because his fevers are hitting 104+ now, he is still barely walking. It is horrible watching him go through this. Right now he is spiking fever and I’ve had to sit away from him because I think I was making him crazy by touching him and asking if he was ok. I just promised him this would be the last one and then he will be better. God let that be true!
We added another ology to our team today, Renal. They are doing a sono on his kidneys and a 24 hour urine collection. They wanted to take him for the sono a bit ago but he started spiking a fever so we put it off. They are open 24 hours a day. lol I think they are sending in a pain management team to see if we can get him off the mortin.