Today was just another day......a day in the life of "The Sloan Siblings Living with JRA." This morning Jake and I start our day off with reading books in the school library and taking AR tests on the computer. Jake wanted to meet his class goal so he can participate the AR Pizza Party! Yes- Jake met his goal before the end of the month! Now....off to Shands Hospital we go! It was a good 3 hour road trip this morning. A special friend had surprised Jake with a DS game and we even stopped at Jake's favorite store in Ocola- Gander Mountain. As we get close to Gainesville- we received a text message that Gavin(one of Jake's JRA friends) and his mom were also at Shands today. Jake was excited- a entire day just with mom, a little shopping at Gander Mountain and was able to play his DS for 3 hours in the car!
The fun begins to slow down as we enter the infusion room. Not always pleasant to see a room full of children all hooked up to IV poles. Jake is always brave- despite what the outcome may be. The nurses greet us both and talk among each other as to who is going to start Jake's IV today. This is not a easy task for Jake or the nurses. Each one of the nurses remember Jake's veins and situations that happen every month. So....we got the video game picked out and it's time to start the IV. As the nurses search all over Jake's left and right arms, hands and then ummmmm.....which should we try! Jake gets a bit scared- but never sheds a tear and is so brave as they dig deeper and deeper and pull and reinsert the needle over and over trying to get a good vein to corporate! Finally- we cheer as the nurse successfully gets Iv started and Jake gets back into the video game!
It wasn't very long and Jake's vein had a "blow out". He tried to tell me and a nurse that it hurt, hurt really bad! Within a few minutes we understood why it hurt as his arm was red and HUGE around the entire IV site! So another nurse was brave to attempt a different vein. Jake did not want any part of this- he was ready to go home! The nurse assured him we are going to start this IV even if we have to put it in his foot! After holding Jake down- and a little bit of luck another IV was started!
Jake tried to focus on his video game as we wait for his nurse and rheumatologist to make rounds. You always wonder what is going to be the game plan today? When have we determined treatment isn't successful and ready to move on to another drug! We know all too well that there is not a easy, definite answer as to how to treat JRA. Jake's doctor talks to him and looks at all his joints and decides we need to add more Enbrel. Jake's eyes light up, the video game on pause- and says to his doctor, " another shot- not on church day". Not only are we adding more Enbrel but also increasing his Methotrexate. Jake shakes his head and says, "no". Jake is old enough to understand that he feels so badly on weekends and days after his methotrexate shots that he is not happy about hearing that he is increasing his dosage!
So the worse part of the day was over.... now the ride back to Lakeland. It wasn't very many miles down the interstate and Jake tells me he doesn't feel well. yup....He was telling the truth, he did not feel well! As it was pouring down rain, Jake is throwing up all over in the back seat of my car. Anxiously waiting for a rest stop or exit to get off the interstate. When I am able to open his car door- he is shaking , crying and apologizing that I am standing in the rain and he made a mess in my car and all over himself. We cleaned up the best we could and headed back on I-75. Now Jake had no clean clothes , so we couldn't stop for a bathroom break. We waited till we came to the Green Swamp....pulled off a dirt rode and did the best we can!
As Jake is getting ready for bed, he shares with me his thoughts. Jake says, "Mom, I'm ready to go to Heaven". I said "why would you say that, Jake"? He says" I'm ready to go to Heaven and have God take away all my pain and be done with my arthritis". I was speechless as tears rolled down my face. Jake says" Mommy, I'll only leave you for a day". "Just a day in Heaven to be free of all my pain, then I'll come back to you". It's not fair that my eight year old son is ready to go to Heaven because he wants the life of living with JRA to be over and live pain free!
Yes -today was just another day living and raising two children with JRA! Please continue to pray for Jake and Hannah and the other 300,000 children who all suffer from JRA. I'm not ready to have my eight year old son go to Heaven to just be pain free! He needs a break and an opportunity to just be a kid and enjoy life!
