Dose two

We made it past the 4:00 spike time with just a little fever of 100.4. Not bad and the Dr thinks we just need to work on the dose. He went 16 hours without fever and that hasn’t happened in 14 days. He got his second shot at 6:30 pm and spiked another fever.

I woke up to a nurse in the room about to draw cultures on him. I was like wait what is going on. I’d already told them no once at 100.4, it’s supposed to be over 102 before they do them. The nurse told me his fever was 102 something and he looked bad. His face turns red and yes it’s starting to look salmon colored. He was so clear before. So they drew the labs and off they went.

There was blood on the sheets and Avery does not like that. I covered it with a wash cloth so he couldn’t see it and promised I would change his sheets soon. I knew the sweats were coming and seriously why do double work? lol I got him a bunch of juice and one of his milk shakes, boost, and helped him through the fever. I am learning to not fawn and to give him some space.

The nurse stuck her head in and asked to see me outside. It seems that someone put the wrong label on the culture so pathology wouldn’t accept it. They wanted to stick him again. I said no. But then worried if I was making the right decision. He has had blood cultures every other day since last Monday and they have grown nothing. I really think the anakinra is going to work and that he does not have an infection. But what if he has gotten one now and I make the wrong decision? So I told the nurse to page his Dr and tell him I can’t make it but would do what he suggested. The resident decided that they wouldn’t call him but would wait and see what happened when the anakinra kicked in. It takes about four hours to get fever relief.

About 9:30 he sat up and griped “stupid sweats!” That means the fever is coming back down so I am happy. I tell him I know you hate the stupid sweats but I hate the scary shakes more. So I have given him a shave and a chair bath and he is comfortable and watching Iron Giant.

I am really trying to stay positive about the anakinra and the possible Still’s diagnosis. I am ready for us to be home and for him to be well. I do think we might need to give him more of the med which means a second shot. But people with diabetes have to take shots every day, you just deal with it.

I know we are blessed. There are kids that are really sick and might not get well. There are families all over having to deal with having a child in the hospital and all the havoc that causes everyone. It is hell watching you child sick and not being able to help them. I think that is the heart of a mother. If we could, we would reach in and take it from them. And honestly I tried. I have tried wishing, willing, begging and praying it away. For whatever reason we are still here and I know he will be ok and I know we will be home soon. Hopefully before Saturday for Zachery’s birthday. But even if not that day then one close to it. Because I know he will get well again. He was too close today for this to not work at all.