Forgetting Lee's Meds

Lee has seizures.  He had them before he was born, and he had one in the presence of an RN at the hospital two days after he was born.  He was born in a small town Nebraska hospital, so we were transported by helicopter to a larger hospital that had a NICU.  He was tested, scanned, poked, and prodded for nearly a week, but no explanation could be found to make the seizures make sense.  He was sent home, and the seizures were quiet, like a dormant volcano.

They awoke.  He had his first of many eruptions when he was 5 1/2.  He was put on Lamictal, and for a period of about a year, his neurologist slowly upped the dosage until the seizures were quiet again.  He hasn't had a seizure, or at least a bad one, since last December.  I had forgotten to give him a dose of his medicine.

He takes his medication twice a day.  I have an alert on my phone.  I have an additional alarm on my phone.  I have his medicine pre-measured in dosage cups.  Six pills a day.  Three in the morning, and three at night.

Even with all of the alarms, and even with the dosage cups, and even with this having been a very long and established twice-daily routine, I still forget to give him a dose.  I still forget.  I still forget.

And I hate myself for forgetting.  It isn't all the time.  I'd say, maybe five times this last year?  Maybe?  But even though the flip side of that means I have remembered 725 times, I hate myself for the 5 times I forgot.  Especially when a seizure could occur as a result.

One of those times was a couple of weeks before school ended.  Lee would have gotten Perfect Attendance for the trimester, but he felt oddly when he woke up, because I had discovered 6 pills in his medicine cup the night before.  His neurologist told us emphatically, that if we ever miss a dose, to give it to him when we discover the mistake, along with the next dose due.  So I gave him all 6 pills at bedtime.  And I kept him home the next day for observation because he was weak when he woke up.

Last night I got his meds out to give him a dose, and I discovered the dreaded 6 pills sitting in the Sunday section.  My heart sank.  I had forgotten his morning dose.  We had an unusual Sunday, and my routine was off a bit.  I gave them all to him last night.  This morning he has been very sedate, very quiet, and very sleepy.  I can see it in his eyes.  One is kind of drooping, and he has to work very hard at not letting them wiggle back and forth.  He spent the morning zoning.  He is in his room taking a nap, which is highly unlike him.

He depends on his parents to care for him, and I hate it when I screw up.  I text his dad when Lee is at his house, to remind him to give him his medicine.  I know how easy it is to mess up.

I am so thankful for medicines that can keep my little one safe, and I am so happy that we live in a country where these medications are so available.  I am so thankful that we found the right drug for him.  One with only minor side effects, and one that does its job well.

And I am thankful that Lee has parents who take this seriously, and that we do administer the medication as needed almost all of the time.  But, when we goof, it weighs heavily.

We live with the stress of having a child with a seizure disorder every day.  Thankfully, things aren't nearly as bad as they could be, but still, we have it hanging over us.  Every.  Single.  Day.  Twice a day, if we're doing our job right.

There are worse things, yes.  There always are.  But, learning to live with the worse things that plague us, whatever they may be, is a life battle we all have to fight.  Tomorrow, I will choose to focus on the good things about his situation.  That he's stable, that he has the meds, that I do remember most of the time to give them to him.  That it could be worse.  But, for today, I can't.  Today I am thinking about how badly I feel, because seeing the consequence of my mistake really sucks.  My poor little boy.

It's so many things like this that add up and grow into big stresses, and I have to watch myself closely, to make sure that I don't take the guilt too far, and go to deep, dark places with it.  Feeling badly is appropriate, but I do have to dust myself off and carry on.

If today is like most of the days that this has happened, Lee will be fine within a few hours.  He will have a good day, and he will hum Darth Maul's theme while he plays.  He will ask me a bilizzion times if it's 4:00 yet, because that's when he's expecting his friends, Thomas and Maggie, to arrive.  He will eat his yogurt, nibble on his grapes, and jump on the trampoline.  

And he will get his three pills tonight, as scheduled, no matter what our evening brings.