Not Always Easy, Baclofen Pump Trial - Blog - Reeve Foundation

Should we call an ambulance? We dial 911, and the response was that all lines are busy but not to hang up, scary how busy they are these days. I’m guessing it’s because of COVID-19.

My 26-year-old son Zack is a C-4 incomplete quadriplegic. He has been paralyzed for a decade now. He was experiencing consistent migraines, nausea, and was throwing up for two days following an epidural procedure. This procedure was to see if he would be a candidate for a baclofen pump. Zack’s full-body spasms take over and interfere with his daily living. We have always tried to view them on the positive side. How they have kept his body from atrophy, and he can cause a spasm that can help him lift something with his hands (that don’t work) or quickly move his foot a few inches or back up to his footplate. The internal baclofen pump will calm or stop Zack’s body from having spasms or uncontrollable shakes.

The idea of his body not having them is both good and bad, I guess. To be a candidate for the internal pump, you must first have a trial procedure. They need to see how your body will react. The Dr. does an epidural; it takes a bit of fluid from your spine area and replaces it with the baclofen medication. This is Zack’s story to tell, but I will share a part of my being with him during the last couple of days. We left the hospital Thursday feeling fine; the procedure was quick, pretty much painless, little mentally scary, but Zack’s body seemed to have a positive reaction to the medication. His spasms were less, still there but not as powerful. We left the hospital, but by the time we were almost back at his place about 20 minutes away, he was quiet and said his head hurt. By the time I got him in the house, he had a small migraine accompanied by nausea. Zack has never experienced a migraine before, but I have. I knew what it was. He went straight to bed. I checked in the next morning and was told he had thrown up all through the night. He went back to the ER, where he was given an IV, pain, and nausea medication, and sent home. The hospital mentioned a possible second “fix it” procedure but said come back if not feeling better in a couple of days. Two days later, here we are, calling the ambulance, not because it’s a total emergency, but its Sunday and the hospitals are full.

Zack’s been suffering three days now, so it seemed the best thing to do. They sent a non-emergency ambulance and took him back to the hospital, where he was quickly admitted and put in a room, despite the ER being packed full and people in the hallways, assuming hours of wait time. In less than an hour, the second “fix it” procedure was done. It’s called a blood patch, and this is a common solution to the common problem when it comes to lumbar punctures. I learned that if the fluid in the spine is even off a millimeter, it can change one’s equilibrium and cause those horrible side effects. The procedure was done in his room, not going under, just numbing the area. Within less than 20 minutes, Zack was feeling better, less nausea, no headache, and he was even hungry! He’s had no food for three days, and I can see why he would be.

Will Zack still be a candidate for the baclofen pump? I believe he is, but the choice will be up to him. We have done our research. A very high percentage of people who have chosen the baclofen pump have reported it working wonders and life-changing for the better; others who have had complications have reported once those subsided, all was good.

Just another story in Quad-Life.

My life has had many parts, I could write a book just on that section but let's fast forward to when I married Adron Collie. Two weeks after turning 20 (yes, very young!) I had Zackery at age 22, Levi at 24, six years later Kaden, and 18 months after that daughter Laila, making me a busy mother of four. At that time, I also ran a photography business. The year Zack was injured I had a child in Preschool, Elementary, Jr. High and High School. Four kids in four schools! I thought I was so busy, just getting their drop off and pick up times correct was a challenge. I have to laugh now thinking back on that because little did I know my life was just about to turn upside down.