We had a infusion scheduled for last Monday. We had switched insurances effective April 1st. Mike and I had both called prior to this and made sure infusions were covered and we would be set. We were told they would be covered and we would be ready for Mondays appointment. Well Thursday the childrens hospital billing department sent of the paperwork to verify coverage with the insurance company and they were told we needed a prior authoraztion which could take anywhere from a few days to a few weeks or so. Since this was Thursday afternoon by this point we were told we had to cancel his infusion for Monday as it was not likely the prior authoraztion would be approved by then. I had called the insurance back and argued that they said everything was set and I was told I must of been misinformed. I was very angry told them he has been on this med for 3 years and this med has made so he can live as a normal child and run and play. It isn't fair for a 6 year old boy to not be able to run and play and be normal because of some stupid insurance not wanting to pay for something he needs for his quality of life! We still went Monday for the eye appointment and kept our appointment with the rhematolgist. His eyes are improving not cell free yet but improving. Eye doctor was pretty concerned about being off the remicade and upped his steroids in his eyes while he is off the remicade. The rhematologist said his knees still have warmth. Jackson has a lot of pain in his legs lately that they said is from his hypermobility. He put him on a new med for pain called Mobic. So hopefully it helps. After the appointments we stopped at the Minnesota Zoo. The kids had fun but halfway through Jackson was having a really hard time walking and needed the stroller. His body gets very tired easily. Saturday he had t ball practice and by the time he got home he tried to play outside with the neighbor but just couldn't handle it and had to come in to rest.
The Children's Hospital called this past Thursday and got the approval from the insurance to go back on the remicade infusion. So we head back tomorrow morning to get the infusion. Hopefully being a week behind schedule won't hurt!
Jackson finished swimming lessons last week and for the first time he can now swim. Not great but he can swim. I will be putting him in next level to help him get better. He also went off the diving board for the first time! He was so proud and did it several times! He also just started tball and has his first game next week!
1 year ago