Welcome to Gary's Mission to Remission!
Juvenile Dermatomyositis, a rare autoimmune disease.
Tuesday, August 31, 2010
It Just Had Too
We came in thru the ER today because all the sudden the calcinosis I have been fretting about started to turn red. He woke up fine. Came down stairs, seemed ok. Made a bed on the couch. He was all excited doing that. Climbed up on the couch and then all the sudden got really cranky. Started asking for me to lay with him. I got a closer look and his chest had a red bump so I touched it like what the heck. He jumped over the moon when I touched it. So I call the nurse left a message. I called my sisters to see what they thought. My sister called me back and said that she remembered something. My brother in law was playing air plane with him the night before, and throwing him up far in the air. The nurse rang on the other line, I clicked over and barely let her talk. I told her I think he might have a broken collar bone. He got off the couch and waddled. He was in pain. I told her we were coming in thru the ER. She told me to keep him as still as possible to keep the bone in line. At that point he was laying on my bed. He screamed when I touched him. I got him in the car in his underwear, he was so uncomfortable. He cried. He was crying because he knew where we were going and because he was in pain. The drive to the hospital is about 50 minutes. He slept on and off. He kept getting pale. Then he said I have to puke. I told him to go ahead if he needed to. Instead, he went back to sleep. It was not usual for him. We got to the ER. He was scared and so was I. I pulled my car through the driveway, did my best not to cry. I did my best to get my keys out of the ignition. I was shaking. I picked him, wrapped him in a blanket, as if he were my precious newborn. Although my new born didn't swaddle nicely into my arms. He soft little hands wrapped around my neck. He hide carefully under his fire engine blanket as his little legs dangled at my sides. He barried his face into neck. He cried with every move I made. He felt warm to me. But his temp was only 99. That is not considered a temp. They took his blood pressure. There they were. Every where I suspected he had calcinosis is a bright red blotch. Like its trying to come out. After being in the ER for an hour, his temp shot up to 103, and he began vomiting. I was so confused. I brought him in for a broken collar bone? Nope. Its not broken. The calcinosis is coming thru it seems. But then his labs came back. White count is 21,000. That indicates an infection of some kind. So tonight we are on watch. The rheumatologists don't want to pulse him if he does have an infection because that could boost the infection. But if its the calcinosis that is causing the trouble, then we need to stop the inflammation. Another fun fact: today was the first day he had no steriod. We were tapering prednisone so today was day one with none. The doctor did wonder if the calcinosis is causing his body to go into shock or infection mode as a reaction to this process. So that is were we are at. His fever broke, he stopped puking.
They ran more blood tests tonight checking for everything. I think right I would rather here he has some a virus. But the calcinosis wouldn't make sense if it were viral. So thats whats going on.