Stop the applause. Hold your cheers.
I’m updating the blog. I know, it’s a shock, but I am. I haven’t written anything on When I’m Better since this summer. It’s not that nothing exciting or post worthy has happened in the last 4 months or so (believe me, a lot has changed), but rather I haven’t had much time lately to sit down, gather my thoughts, and compose anything worth reading.
When I first started this blog, its main purpose to document my intestinal adventures that started in February. However, that isn’t going to be a focus of this entry.
As you may know, I have an intrathecal baclofen pump implanted in my abdomen. Due to my cerebral palsy, my muscles are very spastic. I was four years old when I had my first pump placed. While the device significantly helped me, the incision on my spine kept opening and I contracted a staph infection in my spinal fluid. I was treated and the pump had to be removed six months later, despite attempts to keep it.
Two months later, due to my spasticity, I had a selective rhizatomy. The procedure helped, but not as much as the pump did. Due to my tightness, my hips were pulled out of socket. I had bilateral hip surgery and my doctor said we need to try the pump again. I had another pump placed. While they haven’t been without complications, I’ve had pumps ever since.
For example, the abdominal incision over the last pump I had opened four times over a little less than a four month period of time. That same area is now causing me issues again.
The incision over my current pump (the devices get replaced every five years) started getting red in August. Up until a week ago, we have been keeping a close eye on it, as the incision opening up could allow bacteria to enter into my spinal fluid as it did when I was younger. On the 29th of October, I had three doctor appointments. While I was seeing the orthodontist, I asked to see the plastic surgeon so that he could look at the incision and let us know if he thought it was something to worry about. He looked at it, told me that the incision looked like it would open in “days, if not minutes” and said that I needed to have surgery to fix it as soon as possible.
On Tuesday evening, my incision opened up. On Wednesday, my doctor said that I needed to get to the hospital as soon as possible. I was started on antibiotics and we began the planning process. At first, the plan was that plastic surgery could be in charge of my surgery and simply repair the site by doing an incisional flap and keep the pump in place. However, when the plastic surgeon examined the area on my incision where the hole was, he noticed there was drainage and it was determined that repairing it was no longer an option and the pump could not be saved. The potential of bacteria entering the site is not one we want to risk as an infection in there could go directly in my spine and cause bacterial meningitis.
I was then put on antibiotics as a preventative measure (vancomycin, everyone’s favorite!). In addition, I am now taking oral baclofen so I don’t go into withdrawal as we decrease my intrathecal baclofen dose and eventually take the pump out. The plan is that I will be discharged on Monday and continue to ween down my dosage of baclofen at home until I have surgery a week later. Anything that I’m having done inpatient right (IV antibiotics and intrathecal baclofen dosage weening down) can be done at home, and for that, we are lucky. Why stay here when what needs to happen can happen in Duluth? I will need to go to the clinic everyday to decrease my pump dose, but that’s okay. My bed is much comfier than the bed I have here, and I’m sure my mom would agree that she prefers her own bed to the pull-out chair she’s using here.
Until Monday rolls around, my mom and I are just hanging out in my hospital room. Vancomycin – the antibiotic I’m receiving – makes me very warm, flushed, and itchy (it’s called red man’s syndrome apparently), but thankfully 50 milligrams of Benadryl helps with that (albeit making me very sleepy). I’m also on oral baclofen to both minimize withdrawal symptoms and help with my spasticity, as the intrathecal baclofen does. Unfortunately, the oral baclofen passes through my liver and acts similar to Valium, so I’ve been even more tired and a little goofy and out of it. For this reason, I most likely will not be back to school this week as I’m a bit loopier than I normally am and this would affect my ability to perform well in school.
November is the month of thanks, and I see many people posting on Facebook about what they’re thankful for. So, while I’m really upset that my intrathecal baclofebn pump is going to have to be removed (could you say, then, that I’m not pumped?), I’m thankful that we hopefully caught this potential infection before it caused any issues. I’m also thankful that I’m able to have oral baclofen, as I definitely don’t want to go into baclofen withdrawal (plus, hopefully it will at least help my spasticity a little).
I’m thankful that the recreational therapist lent me this computer to use until I go home. This way, I’m able to connect with the world, do some schoolwork if I’m feeling well enough, and distract me from everything that’s happening in the hospital. I was shocked that my mom forgot my laptop at home and I think that the withdrawal symptoms I was feeling while I was away from the Internet are almost comparable to baclofen withdrawal symptoms. Okay, so maybe that’s a little (fine, a lot) dramatic, but you get my point.
Finally, I’m thankful that there is potentially a chance that someday I will be able to have another baclofen pump placed in the future. I’ve had one for the last 13 years and it has dramatically impacted my quality of life in a positive way. While my pumps and I have a love hate relationship, I am definitely grateful that medicine has advanced enough for people like myself to have a more comfortable life thanks to things like the baclofen pump.
I will update this blog as more information becomes available to us. I will most likely post an update after my pump is removed next week as well.
For now, this is all the information I have to share with you, world. It is our hope that someday, I will be able to have a new baclofen pump implanted. I look forward to the day that I can post a blog entry telling you all that the hope became a reality.
I need to be patient and wait, because it can’t get a new intrathecal baclofen pump now. I will just have to wait to share that news with you at a later time. You know, a time When I’m Better.