Our Spinraza Adventure Continues

When we last updated everyone, we were contemplating switching drugs for Chris’s treatments. After much prayer and research, we decided to stay with Spinraza. Thank you to all that prayed for us during that time and for all the continued prayers you shower over us. Chris will be having another injection on the 25th so we would appreciate prayers over the day.

When I was discussing Chris’s injection with some friends recently, it came to my attention that the process Chris goes through each time has not been explained clearly. So, I will try my best to explain the process.

First, we arrive 2-3 hours early so that Chris can have tests run to make sure his blood is thick enough and he doesn’t have any metrics in his system off. This sometimes takes a bit because Chris’s veins like to hide and not give up his blood easily. Also, the courier that takes all the collected tubes to the lab could be anywhere on OSU campus. On days we are to arrive, they try to warn the courier to be close by so that it won’t take as long to get the results.

Next, we have lunch and wait for the results. We have yet to have any of the results stop him from getting the procedure done. We have had a time or two that we were delayed until his neuro doctor could sign off on the results, though. Those were nerve wracking times, but nothing too serious.

Finally, it’s time for Chris to get the injection. I take off all the extra parts on his chair before he heads off to the procedure room. Once he is in the room, he gets positioned so that the doctor can position the equipment around him and/or in a spot where he can see the screen. After making sure his shirt is out of the way and no hair is going to be in the way, they clean the area thoroughly around his ear and then put all kinds of drapes around the area to keep it sterile before they start the numbing process. The doctor numbs the area just behind and below his ear on his neck. Chris says this is some of the most painful moments because the medication used to numb him sets his neck on fire.

Now comes the slow methodical part of the whole procedure. The doctor slowly inserts the needle into Chris’s neck while constantly watching on the imagining screen where the needle is going. The doctor has to avoid nerves and blood vessels as he progresses to the spinal column in search of the thecal sac. Occasionally the doctor will hit a nerve and Chris says it feels like a lightning bolt struck his head. Once at the sac, the doctor removes some spinal fluid. He must remove the same amount of spinal fluid as drug he puts in to keep the fluid balanced, otherwise it could result in a severe spinal headache. After the dose of Spinraza has been administered, it’s time to clean-up and head to the recovery area.

In the recovery area, I am able to hang out with Chris as he lays back and gets his vitals monitored for about an hour. As his system calms back down, we are talking to others in the room and mentally preparing for the drive back home.

In all we will travel 4 to 5 hours and spend around 4 to 6 hours at the clinic. It’s a day full of nerves and stress but each time when we ask for prayers, you all provide them and we get peace over the day. Thank you for keeping up with us and praying along with us. We really do appreciate all you do! Hope that clears up any confusion. I'll try to update again soon.