The little man had this Baclofen pump screening test on Tuesday. Baclofen is a muscle relaxer that he takes three times a day to help with his muscle spasticity. It is a bit of a hassle because, not only does he take it three times a day, but it needs to be refrigerated. It also brings on a bit of drowsiness. It is also very important; without it the little man’s range of motion is severely decreased.
One option to consider is a baclofen pump. This is a small device surgically implanted in to the abdomen that delivers the medicine straight into the spinal fluid. Basically, it targets the exact spot we are trying to reach. There are many benefits and risks to take into account before deciding on a pump, but I don’t want to talk about those today. Instead, I want to share the details of our pump screening trial.
There isn’t really any point to consider a pump if you won’t benefit from it, so the first step is the screening test. We arrived at the hospital at 8:30 am. After the usual paperwork and vitals, the first step was for the little man to be evaluated by physical therapy to establish a base line. They filmed this test so there would be no question about his range of motions later.
Then comes the part that was awful. The nurse practitioner injected a small amount of the drug into the little man’s spine. There just isn’t really a way to make this a happy experience for a four year old. First they applied a topical treatment to numb him, followed by some shots for deeper numbness, but due to the nature of the test, he couldn’t really have any other type of pain medicine that might skew the results.
It took the little man approximately 15 minutes to calm down after the injection. Then we had to keep him as still and flat as possible for the next two hours. Not an easy task, as I’m sure you can imagine. Two hours later, the physical therapist came back to test and film him again. Thankfully, the little man responded marvelously to the medicine and this test wasn’t for naught.
We hung around for another hour or so, made sure he could keep some food down, then went home after a dose of Tylenol.
Then things got bad.
By 6pm it was clear that the little man had developed a spinal headache. This wasn’t something I had heard of before, but apparently when the pressure in your spine gets out of whack, the resulting headache like pain is unbelievably painful. From 6pm to 3am, the little man cried and cried. He slept in short thirty minute to hour bursts. Pain medication didn’t help at all. Finally at 3am, he settled into a more comfortable sleep.
I stayed home with him the next day and, after sleeping until 11am, he seemed to be feeling sore, but much better.
Thursday morning he was happy and we loaded him up and took him to school. 45 minutes later I got the call that he had thrown up four times. When I got there to pick him up, all the color had drained out of his face. You could just see how bad he felt.
I took him home again and started a delicate battle of trying to keep him asleep so he wouldn’t throw up again before dosing him up with anti-nausea medication prescribed by the neurologist.
This was rough.