On Thursday, August 29 in the afternoon I started experiencing severe pain and having “episodes”. They were instances where my eyes would roll back in my head and flutter and no one can get a response out of me for however long they happened. Half the time when I came to I could remember things and half time I couldn’t. I was also screaming in pain that was shooting up into my head.
I was at my house with my physical therapist, nurse and mom. They debated whether to take me to the ER or call 911, but opted for the latter. The only thing I remember from this point was being loaded onto the stretcher and wheeled around the back of my house. They couldn’t find an IV on me in the ambulance and I kept telling them to try the top of my hand. At that point I wasn’t aware that that was one of five places already tried. They took me to Methodist Hospital and the first thing they did was an MRI to see if they could find what was causing everything. I also remember bits and pieces up to the MRI and afterwards because I fell asleep. I thought this was really odd given that extreme loud noises come from the machine (so did everyone else).
On a side note, they were calling my “episodes” seizures and my mom had to convince them otherwise because she had seen this behavior on me before. In a very similar situation back in 2008, I was in baclofen withdrawal. It was due to a break in the catheter from the pump administering the medicine into my spine. Although in that situation, I was having severe spasms along with the “episodes”. It took them 48 hours to find out what was wrong when they eventually decided to replace the pump. (To read about my baclofen pump click here and to read the post about my withdrawal click here.)
I was in and out of it all weekend. I don’t remember much and supposedly was really loopy on drugs! After they didn’t find any results on the MRI, my mom consulted with the neurosurgeon about my history of baclofen withdrawal behavior. It was decided that that was the reason for my pain and “episodes” and on Friday they transferred me to Gillette Children’s Hospital in St. Paul. From there the plan was to do a blind surgery not knowing or being able to see what was going on with the catheter from the pump at that time. On Sunday I went into surgery and they replaced my baclofen pump and catheter, and also moved the location of the catheter from T5 to C5. (I had talked about moving the catheter higher in an earlier conversation to help with decreased spasticity).
When I woke up they could tell that the surgery was a success and that I was better because the pain and “episodes” had stopped. As a result of the procedure, I had to lay flat on my back or side for 72 hours. I could only put my head up 10° when I ate. Needless to say I counted down the hours and then minutes until Wednesday at 6:15 PM when I could start raising my head up 10° an hour. (I made it almost 4 hours the first night without any trouble.) The following day I worked on sitting up in bed more. That’s when I could finally see what my room looked like and the view from my window.
Thursday evening I got into my wheelchair for the first time in a week. I still remember how excited I was even if I wasn’t going to leave the hospital room. I sat in my wheelchair for three hours and from then on pushed myself so I could go home as soon as possible. The doctor had told me that morning that if I tolerated sitting for a few hours that I could go home the following day (Friday). On that note I was out of the hospital around 2 PM Friday, September 6!
Brody was so excited to see me when I arrived at the house. He had been missing me all week. His breed is known to be very loyal to their owners. There was even many times where he wouldn’t even eat. In the hospital, I called and talked to him over the phone and he would wag his tail in excitement. I also missed my little niece, Avery while I was gone. Let’s just say I had a little reunion waiting for me!
It ended up taking a couple of days for my body to get used to my old routine. My mind recovered faster than my body wanted to. I found myself in a couple instances where I’d be so tired everything would shut down at once when I least expected it. This led to some quick transferring from my wheelchair to my bed by my family and caregivers. Needless to say less than two weeks past surgery date I’m finally back to normal and fully recovered.
Although the whole situation in itself was hard and I don’t like being in the hospital, many good things have come out of this whole experience. The biggest and most obvious is how much better my muscle tone is. Throughout the last week I’ve been experiencing the different stages of my muscles as they get used to the new amount of baclofen that I’m on. It’s a lower dose than before since the catheter is higher up. It’s amazing how much more relaxed my muscles are than before. I never realized how much just moving the catheter up would change that. Also, it’s easier to do range of motion and therapy on me.
About a year ago I started taking some oral baclofen because my baclofen pump was at its max dose. I have a Doctor appointment on Wednesday to assess the pump and the dosage I’m getting. I’m going to see if I can turn the pump up and taper off the oral baclofen. That would make for seven less pills a day!
It took this experience for me to find out how much my muscle tone was affecting my ability to do things. This makes me think that there was something wrong with the pump for quite a while and I didn’t realize it. In the future, I’m definitely going to trust and listen to my body; I’ll know how to react if it tells me something’s just not quite right.
Stay tuned… I have a lot of posts building up in my head !