Trouble, trouble, and more trouble

We have been so busy with doctor's appointments and illness, I have not kept up with the recent developments of Trevor's condition.
First, Wednesday night at 5pm, Trevor's right hand froze into place.
I guess that should have been an indication of things to come but.....I didn't know it at the time.
At around 8:00 I picked Trevor up from church. He began shaking and hurting all over. He went from 98.7 to 101.1 in 30 minutes. He was miserable. I called our pediatrician but he was not on call so I called Shands. I spoke with Dr. Monica. She had me perform various tasks on Trevor. One thing he kept complaining of was chest pain. She said to give him Tylenol and see if he could make it through the night. She said no matter how he felt that I needed to take him to the pediatrician in the morning.
He made it. He was still not feeling well but no fever. I took him to Dr. Eanett and he did a face x-ray and drew blood. He was going to talk to Shands and then decide what to do. The face x-ray showed infection. We went home to wait for the doctor to call. He finally did and told us that Trevor's white blood cell count was extremely high. His inflammation protein was also very high. They put him on an antibiotic and wanted a chest x-ray and an echocardiogram. They wanted to be sure the pneumonia was completely gone and make sure he did not have inflammation in the lining around his heart. (Yes....I was extremely scared!) The chest x-ray was clear and the echo showed no inflammation. He wanted to see him the next day (Friday) to see how he was feeling. When we went on Friday, Trevor was still feeling bad(maybe a little better) but not great. The doctor told us any other pediatrician would put him in the hospital but he really wanted to save us from that. He decided to do a flu test. He told us to come back on Saturday to have more blood taken.(He wanted to be sure his WBC count was down).
We get the call that he tested positive for the flu. So he wants him to take the antibiotic because of the WBC count but also tamiflu.
Dr. Eanett called us after the blood work on Saturday and said his WBC count was back to normal. He still had no idea how the flu or a sinus infection could cause it to increase that much.
He hurt everywhere...(except his face where you would expect him to hurt!) his neck, shoulder blade area, lower back, knees, hands, fingers, toes, ankles, heels, and sides of feet.
Today is Sunday and he is much better. He still has lots of arthritis pain and is congested but feels better. He did not lay in bed all day!
Dr. Eanett said he might have to stay home on Monday but he is ready to go back. He said if he went, he would probably need a nap when he got home.
He coughs a lot still.
I am scared there is so much more to come. What will happen when he goes off the antibiotic again? He was on 3 days off the last 10 day supply. He is on it for 14 days this time. He finishes the tamiflu on Tuesday. Can I keep him in a bubble?

Just a glimpse...

Once in a while we have an evening where Trevor wants to spend the night at a friend's house, or hang out outside.....I miss these days. I get a glimpse of them once in a while. It may only be short lived but when it comes, I miss that "old" life.
Trevor has been struggling with his arthritis from getting pneumonia. He gets tired so easily and has now missed school for not being able to move. He said he hurt in places he has never hurt before. He is getting better now but it was scary for a while. He still has congestion and hurts some and I worry when all the extra medicine(antibiotic and steroid) is done, will it all come back?
He wants to play basketball. I talked to the YMCA today and they agreed to refund the money if the doctor said Trevor could not play. I had to sign him up. I am so tired of being the "bad guy". I am always the one saying don't do this or careful of that...I have tried. I have no idea what the doctor is going to say but I tried. For his mental state maybe for mine but all we can do is ask the doctor on February 4th.
One thing I have learned with having a child with juvenile arthritis is that you never know what tomorrow will bring. Will it be a good day? A bad one? You just never know. For Trevor almost every evening is pretty bad but in this crazy roller coaster of a life once in a while I get a glimpse of the way things used to be, a normal evening, Trevor not wanting to come home and play outside until late and wanting to stay the night at his friend's house.

What a day....

Trevor has had a cold for a while and a cough. Well I finally felt enough was enough and took him to see Dr. Eanett. Trevor has pneumonia. It is not bad enough to be hospitalized but he put him on a strong antibiotic.
I called Shands to make sure they agreed with everything that is going on. They agree and liked that they put him on levaquain.
This is now Sunday and Trevor is better but his Arthritis is really acting up. He told me he forgot how bad he had felt. His back, neck, fingers, hands, feet, heels, toes, ankles, and knees hurt. He is still dizzy feeling but I hope he is okay to go back to school tomorrow. This is the first time he has missed school for illness. He still has quite a cough and sounds congested but he acts so much better.
The doctor also wanted him to go back to 2 times a day on the celebrex. I guess we will see how it goes.
Dr. Eanett kept telling me not to feel bad that it is really hard to know with arthritis kids when to bring them to the doctor. I know he knew I felt so bad about Trevor getting to this point. He told me to use my instinct and best judgement. (I hope I have that!)

January appointment

Trevor had his infusion at Shands on Monday, January 7th. All went well. He actually feel asleep so it was good for him. It felt like we were there forever....I don't know if it was because he was sleeping or what anyway. I hate the drive, the situation.....everything. The good news...Remicade seems to be working. Trevor started feeling bad a week prior to his appointment so it hopefully means it was just wearing off.
Even though we did not have an appointment, Dr. Sukesh stopped and talked for a few minutes. He said since the Remicade seems to be working, he wants him to decrease the celebrex to one time a day(afternoon since that is when he hurts more). I am hoping in February he will take him off it all together.
A new problem we have is that Trevor has a cold. He has had it for almost three weeks. I called the pediatrician and he wants to see him tomorrow. This will complicate the medication Trevor is on. He will have to stop some,etc if he is put on an antibiotic. I hate all these medications!!
I think I am also hitting the point that I am so tired of talking, thinking, and always worrying about juvenile arthritis. I find I don't want to talk to the other parents as much. Unfortunately, the families that stay vocal are the ones that still have problems,etc. it is so difficult to find the families that can give you hope. Don't get me wrong, these families are amazing...willing to help with anything especially with words of encouragement or ideas, whatever. I just want to hear about kids that are better, not in pain, and living a life where they don't think everyday about Arthritis. I am sure it is a normal process in dealing with this disease but it is so different than where I was just a couple months ago. I wanted to know everything and anything I could learn, now...I don't want to hear anything. (Except some nights I do find myself researching studies that were completed on children with JA.). The studies are so mixed...Enthesitis-related JA is so uncommon, there is even less studies done on it than other types of JA. I guess I also think about the year anniversary of Trevor being diagnosed. It is February 20th (5 days after he turned 12). The doctor was hoping to have one year of treatment and than be done. After he failed Enbrel, I knew that was not the case but I wish it was! Okay...I will update after the doctors appointment tomorrow. I am sure many changes will take place. (This is also the first time we will see Trevor's pediatrician since we were officially diagnosed). 😁