The latest

I really don't know how I feel right now. I think I may still be in shock (which I think I live in right now). We went to see Dr. Sukesh at Shands. We are almost 4 months on Enbrel. He was very disappointed in Trevor's condition. He looked and felt worse than when we started this. The doctor has an ultrasound and was able to look at Trevor's joints and tendons. He looked at this wrist and foot. He had inflammation everywhere and fluid around the joints and tendons. He really saw the enthesitis (tendons). The. Sukesh said the Enbrel should be working by now. So he really wants him on remicade. He will begin in 2 weeks (once insurance approves it and they get the medication). He will go in 2 weeks than in another 2 weeks than monthly. The first four weeks will take 4 hours. Remicade is infusion based so we met the nurses in the infusion room. They all seemed nice but I could see the fear in Trevor's face. It really scares me to think of seeing him sitting in the chair with the IV and pole thing.
After the first four weeks it should take just 2 hours. The first couple, they have to be sure he does not have a reaction to the meds,etc.
Trevor did such a great job naming and pronouncing all of the meds he is on. I love how Dr. Sukesh talks to him also and wants to know his opinion as well. I just can't get the image of the doctor's face out of my mind when he looked at Trevor's wrist. He could not bend it down that far. He said Trevor is in a lot of pain. He could really tell that from the ultrasound.
He also wants to put him back on Celebrex. He seemed to feel better on that than Mobic but it bothered his stomach. He also increased his Prilosec to help with the stomach. I am hoping to get the Celebrex started this week so we can see if there is any improvement before the remicade.
I really don't know how these moms do this. I feel like I am on a roller coaster that I cannot get off of. I really felt deep down that he was going to put him on remicade which makes me sad but I also feel deep down that this is going to work. It has to.
Trevor is hurting so much today. He played football at PE and ran for a touchdown which I think really irritated him. I feel so bad for him. I pray one day he can run and not feel pain and not have to suffer for just wanting to be a kid.