Earlier this month, we spent the day at Vanderbilt where Jonah had a sedated MRI and another round of blood tests. It was a difficult day for the poor little guy. Nothing puts a kid with a fear of needles over the edge like discussing how his IV is going to work. I can't say enough about the people who work at Monroe Carroll Jr. Children's Hospital. They are absolutely unbelievable. The hero of the day was Sarah Beth from Child Life Services. This woman showed up and sat with Jonah who buried his head in my chest in an effort to actively ignore her. She chatted with him, explained to him what was going to happen, showed him pictures of the MRI machine, all while Jonah sat there quietly freaking out. Every time she asked him a question, he responded with a whiny, "I don't know." When she was done familiarizing him with the process, she broke out markers, dinosaurs, farm animals, play-doh and a toy grocery store set. She played with him for two hours while we waited for the MRI. She didn't bring him toys so that he could play, she sat on his bed and played with him. By the time it was Jonah's turn, he calmly and happily went back with Sarah Beth, who stayed by his side until he was asleep. After the test, as we sat with him in recovery, she returned and brought him a long strip of dinosaur stickers. Child Life Services is truly incredible, and it made a seemingly terrifying and stressful experience seem not so bad. After the MRI, we brought Jonah up to Endocrinology where they drew blood from his IV every five minutes for half an hour to test his cortisol levels.
Our doctor called a few days later with the results. Jonah's pituitary gland is perfect. His cortisol levels are great. Strangely, his growth hormone levels were also within the normal range. It's a little frustrating. Even though we have two blood tests showing his levels to be low, and one bone scan showing that his bone growth is slow, this test showed everything to be normal. Jonah is back to an ISS diagnosis, and we are back to having to fight to have growth hormone therapy covered by his insurance.
Fast forward to this morning! Pharmaceutical company Novo Nordisk called to tell us that our doctor has enrolled us in the NordiCare Jump Start program. We have been assigned a NordiCare case manager who will be handling communication with our health insurance company, submitting our claims, and working on appealing when that claim is inevitably rejected. In the meantime, they are sending us a free first month of Nortropin growth hormone therapy. The idea is that when our claim is rejected, our doctor will be able to appeal and show the insurance company how effective the therapy has been for Jonah and how important it is that he continue treatment. So, a box full of dry-ice-packed growth hormone pens and the necessary equipment will be arriving at our house this Wednesday! Subsequently, a nurse will come to our house to teach us how to administer it, let us practice in a cushion and stay to help us give Jonah his first shot.
The next big hurdle is breaking it to Jonah that the treatment is a shot...every day. He's going to be thrilled.
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