Monday, June 25, 2012

Tools of the fight

Every day of the week, Will takes no fewer than 7 medications. Two are for his g-tube, one is for hypertension, one for muscle contractions, and three are for seizures. Putting together tubes of medications, crushing pills, emptying capsules onto applesauce and filling g-tube extension sets... it has become a part of both our morning and afternoon routines. Both Nate and I have our ways of ensuring that in both the early morning hours, and the crazy nights before bed that Will gets all the medications that he needs.

These are our tools of the trade. Our tools in the fight against effects of his cerebral palsy.

When Will first got home from the NICU, he only took the medication for hypertension. His brain hemorrhages damaged the portion of his brain that control blood pressure, so the medication kept his blood pressure in a normal range.

Then Will got the g-tube, and we added two more meds. Then he started having seizures, and we've been through several medications to combat that. Finally, we added the baclofen to stop the muscle contractions that were keeping him up at night.

By now, it is normal for us... but I know that Will takes more drugs than your average 80 year old. I can tell by people's googly eyes when we visit that Will's cooler bag of medication is more than they were expecting. To write down his list of medications to a babysitter handling bed time is a dose of reality. Its a lot of drugs to keep track of. Keeping up with the prescriptions and the doctors and the refills and the drug coverage is practically a full time job.

As I said a couple of days ago, Will has been averaging about 2 seizures per week for the past 2 months. Every third night. Tonight was supposed to be that night.

Will wouldn't go to sleep. He was rolling around in bed, laughing and carrying on as Luke slept. The thunder rolled, and for an hour Will did not go to sleep. At one point it got silent and I went in to check. Will's eyes were open. I thought for sure the suspected seizure was upon us.

I grabbed him quietly from bed and brought him to the kitchen for Nate to look. At that moment, Will smiled a full-faced grin. There was no seizure. He was just excited to be awake.

So he hung out with us on the couch as we caught up on DVR'd episodes of Food Network Star. He was silly for a while, and then seemed to get annoyed. We thought he wanted to go to sleep, but he kept indicating that he wanted to stay with us.

At some point we noticed that Will's eyes kept drifting to the left, and his head would stay to the left. We tried to gently straighten it, but he kept holding his head to the left. Then he would just stop and smile and look at us. Then the eyes and head would hold to the left.

It was like he was starting to have little inklings of a seizure, and would pull himself out of it. This happened repeatedly. Just at the moment we would get concerned, he would stop and smile and interact.

This went on for about 10 minutes. We'd never seen anything like it before, but we also don't regularly watch Will fall asleep to know if this was really out of the ordinary. The act of falling asleep usually takes Will an hour - we just haven't stood in his room and watched him for that long. Maybe in the hour that we hear Will making noise and a mess of his sheets and pillows, he's fighting the seizures that he feels coming. Maybe he gets the auras that people with seizures talk about... and maybe he just can't tell us.

After Will finally gave it up and went to sleep on Nate's chest, we talked about what had just happened. We watched intently to see if he would start to seize like we were used to seeing. As he slept soundly, we got teary eyes talking about the quiet fight we had just witnessed. He clearly didn't want to let the seizure take over. Will is such a strong little boy.

I guess it goes to show you that you don't need a prescription for a bottle of gumption.

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