In two years so many things can change. I have had the opportunity to laugh, cry and expect the unexpected. In April 2008, my husband and I received a beautiful, healthy baby boy from heaven. We named him Brayden and he was welcomed home by big brother Treyton. When parents bring their healthy baby home from the hospital, they never expect a few years later they would be back in the hospital searching for an explanation to what is making their child sick. September 2009, started our long journey and changed our perspectives.
The signs of Braydens condition were not really recognized until September, but looking back I can tell he had something going on in the beginning of August. We had a few trips into the doctors office for unexplained pealing on his hands and feet and really red cheeks. They called it a virus and I thought maybe their was more, but blow it off. I notice the infamous rash one day in the car that came out of no where. It was hive like and covered his legs and stomach. I called the doctor right away and of course the regular doctor we saw was out and I had to take him to one of his partners. I would have rather taken him to the vet then see this doctor but I had no choice. When we got there the doctor thought it was just from something he was sensitive to, but I had my doubts he has never known what he was talking about. He told me to come back in a week if it didn't clear up. Within that week, Treyton ended up bringing the lovely Flu home from school. Yuck!!! We got to go visit our home(s) away from home the doctors and Target. We all ended up on medication for the flu and Brayden continued to have the weird looking rash. We got over the flu, but Brayden started to develop fevers. I'm not talking the yep you have a little fever, but you will be fine. His temps were like 103 to 104 and the lowest it got was round 99. Called his doctor after hours and he told me to bring him into the ER urgent care to get his ears looked at and cough that he has now developed, since getting the flu. We load up and took a trip to cesspool of diseases being its flu season and all. They do an xray and say he is fine. Take him home and the next morning he can't walk up and down the stair and is limping. I call the doctors office crying ,because my baby who was running around and was fine can't walk correctly. They have me bring him in right away. When I get there two doctors examine him and recommend I bring him to see a pedeatric orthopedic doctor that day. They tell me if they can't get Brayden in to see a doctor that day; I need to bring him directly to the Children's hospital ER and tell them what is going on. Kyle and I pack up Brayden and take one of the longest rides of our lives to the Children's Hospital of St.Paul. We get there and they begin blood work, take a xray of his chest, throat culture and take his temp. When all of the stuff comes back they tell us they are going to admit him do to all of his abnormal blood results and his lack of movement in his leg. At this point they thought it could be an infection in his hip bone or joint.
We spent three days four nights. Brayden was being monitored and given Tylenol around the clock for fevers. Blood test, urine culture and any other test he could get he got it.The first time Brayden was put down was for his scan on the hip joint. It was so hard to watch him as he was looking up at us with wondering eyes and then limp. We knew he was in the best place and they took really good care of him. After his scans came through and everything else was eliminated they sent in a rheumatologist. She stated they believed Brayden suffers from Systemic JRA and a clear prognosis can take awhile. They have to be 100% certain it is JRA, before they can start the medications, because the type they use alters the DNA. And that means there is no turning back to recheck, if medication is started. From that day forward we have been monitoring Brayden's blood work. We had to take him in for weekly blood draws and had to have an echo done for his heart to eliminate a disease and make sure it was no enlarged. We also had to watch him be put down again for a bone marrow biopsy to eliminate Cancer. In December of 2009, Brayden was diagnosed with Systemic Juvenile Arthritis. This was a bittersweet day...we know this is what he has but the future is unknown. To know that your baby may have many hardships physically, breaks your heart but when they smile you know everything will be ok. Brayden was prescribed three different medications...Methotrexate (Chemo drug-Cancer patient use it) shot form 1X/week, Kineret (Off-Label use for children that have systemic JRA) shot form every day and liquid alieve 2X/day. It was a very difficult choice for Kyle and I to make on whether the medications would do more harm then good.We also found out due to my request that Brayden was extremely vitamin D deficient and we started him on supplements. The blood test that where coming in were scary for the fact Brayden was severely anemic and was borderline needing a blood transfusion. Before starting this medication, I really felt we needed a second opinion, but again pushed the little voice in my head away. We decide to have him start all the medication to avoid any more damage to his little body.
