INJECTION DAY #1

Who looks forward to an early Monday morning alarm clock going off? Not many would say they do, but I laid in bed waiting for it to go off so that we could start the adventure that we had been waiting so long for. Katie and Chris are not morning people so their reactions to the wake-up experiences from me were not as chipper. After we got loaded in the van, we prayed for safe travels, good test results, and a successful procedure. Then it was time to take off, a little later than we wanted, but that’s nothing new with us. As I’m driving, I delegate Chris and Katie to reach out on social media for prayers. Chris comes through, but Katie is already falling back asleep. So, when we hit Cincinnati traffic, I send out a prayer request on the Crossroads Anywhere app (might as well get all the prayers we can). Nearly two and a half hours, two interstate construction zones, and a GPS lock-up/rerouting later we reach OSU. So far, we have had only minimal drama, so we’re feeling pretty good. I drop off Katie and Chris at the front door and go to park the van. Then I lose them in the cell phone dead zone for a little bit. When I find them, Chris needs his medicine to get his heart-rate down (whose wouldn’t be racing when they are getting ready to do something new) and a new system has staff flustered about getting the orders from the system for the procedure. Again, nothing too dramatic because when working with computers, issues are bound to happen. Next, it is time for the blood work and lab visit. This is the part that usually sucks because they always have a hard time finding a vein to use on Chris. So, Katie and I are helping the lab techs look for a vein and Katie turns to me and warns me not to look since I nearly passed out on her once when she was getting stuck with a needle. When she turns back around, she watches them draw some of the blood they needed, but the vein didn’t give them enough so they started moving the needle around; Katie lost it then. She turned around and I asked if she was okay. She says no and starts to get very green. I got her to a nearby seat and then the lab techs notice what is happening and stop working on Chris. Next thing we know Katie is slumped back in the seat with her eyes open and not fully responding to us. By this time, lab techs are swarming all over bringing ice packs to cool her off. She then begins to gag and a trash can appears. Katie says she doesn’t remember most of that, but does remember waking up hugging a trash can and feeling very cold. They get Katie a wheelchair and rolled her out into the waiting room with a nurse that was helping with the injection process and return to getting the blood from Chris. Oh yeah, we left Chris there with only minimal knowledge of what was going on, unable to move or see what was happening. After they got all the fluids they needed from Chris, we found Katie and pushed her to the cafeteria to wait for the results to come back. I think Katie enjoyed me pushing her around in the wheelchair and figuring out how to use it on her own. After about 45 minutes we got an alert that the results were in so we head downstairs to drop off the wheelchair and head back to the injection waiting area. As we are heading there the nurse calls us to say they were ready for Chris. When we get there, we get to meet the doctor performing the procedure and get a better understanding of what is about to happen. Katie and I then get kicked out of the room and Chris is now alone with strangers.

Chris’s thoughts

I was excited, but nervous. I was happy I could stay in my chair, but it was weird because there were a lot of people in the room with hair nets, surgical masks, and full body lead aprons on. Then after I got settled, they started bringing the C-arm x-ray machine to start taking pictures of my head and neck. This is when the anxiety started kicking in because I had all these strangers with their garb on and I felt all alone; I started to freak out a little. However, I realized I wasn’t alone after I remembered the most important person was in the room with me: Jesus. So, I said a little prayer and asked for comfort, to keep me safe, and to guide the doctor’s hands. I then felt an instant calm come over me and I was ready to go. With only a little discomfort from the numbing meds, I didn’t really feel anything until the Spinraza meds were injected and then it was only a little warming sensation behind my ears. After all was said and done in 30 minutes, I was ready to head to the recovery room. God had kept me comfortable, safe and had guided the doctor’s hands just like I had asked.

Katie and I feel like we barely got settled and here they come to go to the recovery room for the next hour. We hang out together, talking about how fast it all went and of course what we were going to eat for lunch. Katie was enjoying being in a rolling office chair, talking to her dad so much she could barely sit still. Somehow, she gets stuck in the chair and falls out of it. The nurse in the room then gives Katie the nickname “Crash.” Katie agrees with the nurse and feels a little embarrassed. Then the hour is up and we head home with no incident. As the days progress, Chris doesn’t notice any changes but I noticed a little more stamina from him. At the annual Cincinnati MDA Muscle Walk, I point it out to him and he realizes that what usually required several stops to readjust has not been the case that day. He also did not have a headache like was warned about.

So here we are just hours away from the second injection and we are hopeful for even more improvements. Even if they seem small we know they are big. We want to thank everyone that has been praying for us and ask that you continue to do so. God has shown up in this process and we are so glad to see his hands in this. He is an amazing God and I can not wait to see what he has in store for our future.