He was so brave.
We had to be at the Pediatric Infusion Center at 8:30 am this morning. Rather than getting up super early to make the long trek from Oakland, Jonah and I drove up to Sacramento yesterday afternoon and spent the night at my in-laws in Elk Grove last night.
Jonah woke up on his own at 7 am this morning, ready to go. He had to fast before the test (no food or drink after 10pm the night before) so I had him quietly play with toys to keep his mind off breakfast while I got ready. (That boy loves his breakfast, so the thought of not being able to eat made him sad in the days leading up to the test).
On the way over, Jonah cuddled with his favorite furry friends - Shooka, Swirly, and Splashy. He also had a very serious moment of singing "Call me Maybe," one of his fave songs!
Once we got there and they started making up his bed, I could tell he was getting a little nervous. Thankfully, my mom just handed-down her old iPad to us so I whipped that out of the bag and had him play a few games on there. It turned out to be a really calming distractor as the nurse was setting things up.
The procedure started with inserting an IV. Jonah did great - no tears when they put it in! His nurse, Tina, was awesome. She explained everything that she was doing and made sure Jonah always knew what was coming next. Once the IV was in, it was time for the first of six blood draws (each 30 minutes apart).
Thirty minutes into the test, Jonah was given a drug called clonidine. Clonidine causes the pituitary to secrete growth hormone. (The blood samples taken at 30 minute intervals measure how well the pituitary is working). As it turns out, clonidine also makes you very sleepy. Before long, Jonah was out.
He slept on and off for the last hour and a half of the test, waking up every 30 minutes to take his blood pressure and do his next blood draw and then falling back to sleep again. In the last hour, they gave him a second medicine, L-Dopa. Then, two more blood draws.
Somewhere in between all of that, he tried to watch a movie but he couldn't do more than 10 minutes without falling asleep. That was right about the time my friend Brenda came over to check on us and visit with me for a few minutes.
When it was all over, Tina took out the IV and Jonah right away got up to use the restroom. By the time he got back to us, he was looking awful. He was grabbing his stomach and telling us he wasn't feeling well. He started crying, saying that he wanted to go home. He was very worried that he was going to throw up (a side effect of the L-Dopa). The nurse couldn't persuade him to get back into that bed so we sat him in a chair and she put a cold wash cloth on his head. I got the iPad back out to distract him once again and the nurse got him some grape juice and gold fish crackers. Before long, he was feeling much better and we were ready to leave.
Rose met us at McDonald's (Jonah's choice) for lunch. Jonah ate well and felt MUCH better after getting some food in his stomach. After lunch, he got to go to Rose's house to play for the afternoon while I went to work at The GreenHouse (where I was exhausted all afternoon). Playing with Jack was a nice treat for our brave boy!
I'm so relieved the test is behind us. Yet, I'm sad that we had to do it in the first place. And still so angry at all the circumstances that led up to us being there today. We fought for so long to get him approved for medication without taking this unnecessary test. But all of that was for naught. We lost the fight. The insurance company won. They got their way and that makes me sad.
Now we wait for results. And then we send the results to Cigna. And we wait for their approval. We'll keep you posted. Thank you so much to everyone who called, texted, and prayed for us today. Your support means so much!
