Friday, November 1, 2013

November 1, 2013 update

I haven't updated in a little while and figured that today would be a good day to share what has been going on. Jacob is coming up on 10 years since his diagnosis of arthritis. There have been many ups and downs along the way. Recently, we have been going through some downs again. Let me start with an update on his arthritis. Just a few weeks ago Jacob saw his rheumatologist and he is still
continuing to have some issues with that one knee. His left knee. There is fluid present. He had recently been complaining that it is bothering him when he stands for a long time. The rheumatologist also feels as though there is still something going on with his left hip too. It is still really stiff. She decided instead of touching the Remicade dose, that she would up his methotrexate. So a few weeks ago we upped that med. The day after we saw the rheumatologist Jacob was scheduled for his Remicade. He has been on Remicade since February and had been doing well with the infusion aside from a few times of them struggling to find the vein. That day that he went in for his scheduled infusion they were unable to get a IV line in. After quite a few pokes and Jacob in pain, we decided to try again the following week. So last week we returned to the infusion center at his eye specialist and they tried once again to start the IV. No luck again. Jacob was in tears. It is so heartbreaking for a mother to watch their child go through a procedure like this and not even have success. My heart was breaking for him. So we left for the second time without him being able to get the med that he needs so desperately. Without this medication he is in danger of losing his eye sight and not being able to walk! The doctor decided that Jacob should get a port and felt it should be soon. The longer he would be off Remicade, the more chance he could get as reaction to it when it was restarted. Jacob was very upset with this news. He did not want a port. He was adamant that he was in no way getting one. So not only is it hard for me to make this decision for my child, its even harder because he is a teenager and he feels as though he should be able to help make decisions for himself now. Over the last week I tried so hard to convince him this is for the best and it needs to be done. I cried so many tears over the last week. I decided on calling the pediatrician and speaking to him about other options. His office ended up contacting the rheumatologist. So by Wednesday morning the game plan was changing. I spoke to the rheumatologist and we decided that we would move his Remicade to be done at Tufts. They have highly skilled pediatric nurses who she assured me "were the best of the best". So if there was any hope of getting a vein they would find it.

After many phone calls between the rheumatologist, the insurance company and myself, Jacob was scheduled today to do his infusion at Tufts. I am so happy to say he was able to get the infusion and NO PORT. We had such a great experience at the hospital. The nurses were phenomenal. The took their time looking for the best veins and placed numbing cream on the areas. The let him sit for an hour before they attempted the IV. Then before they attempted his IV they brought over a machine that was held over his hand to be able to see the veins clearly. It was pretty cool to be able to see them like that. The with just one attempt the nurse got a great line in! Jacob did not even feel the stick at all. What a relief for both of us! They gave him some premeds before they started the Remicade and also took a ton of blood for blood work. Jacob had never been premed before the infusions. The benedryl knocked him right out. This made the day go by much faster for him. I have to say I do like the extra precaution to avoid an allergic reaction. So these past few extremely stressful weeks finally ended with good news. I am so very grateful for our very awesome pediatrician and rheumatologist.

finishing placing the IV
waiting to start the procedure