Monday, November 18, 2013


It's nearly eleven o'clock and I just finished working out. I dusted off the elliptical machine and went back and forth for 35 minutes.

I feel a little better. Seventy-two minutes ago I was leaving my therapist a message, asking her to remind me of this moment. Sitting on the edge of Dermot's bed, holding him on his side while I pat his back so the mucus he just coughed up can escape before he aspirates it. While holding him I was monitoring his O2 level and heart rate with the handy pulse oxcimeter we're renting from the medical supply company. I also had to make sure the snot that was coming out of his nose wasn't clogging the nasal cannula that pumps a 1/2 liter of oxygen into his lungs while he sleeps. Then he seizes, body stiff, eyes wide open, his gaze is forced upward.

I'm stunned. No other way to describe that moment. I just completed day five of staying home with a sick Dermot. Today I haven't left the house, yesterday I left for an hour to go to Target, same with the day before that. I am beyond frustrated. I'm stunned.

It all started a six weeks ago when we decided to switch seizure medications. We'd been on the same protocol for over a year and his seizures were getting more frequent. 10-20 a day were evolving into 30-40. We changed the medication, added one while slowly going off another. The other two he's on stayed the same. The seizures began to diminish, his muscle tone was better. Then the mucus. The coughing, the suctioning...

We've been suctioning him multiple times a day for weeks, we send the machine to school so the nurse can suction the mucus out of Dermot too. I decided it was not worth it. I'd rather have more seizures than ALL this mucus. We tried tapering off the new medication, the mucus continues, the seizures return.

Dermot and I visit the pediatrician. I go to the visit with a long list of concerns and requests. I got to the second item on my list before I started to cry. Again, this doctor has seen my tears countless times. Handed tissues to me, tries to help Dermot. This visit, he tells me he's been doing us a disservice. Never before was a Care Conference mentioned, never before has he spoke of a DNR order for Dermot, never before had he talked about Dermot's quality of life vs. medical procedures, surgeries or medications. Finally I felt like someone heard me.

I feel as if I've been sitting in the back of the classroom with my hand raised, but no one is calling on me. Pick me! Pick me!

So we left that appointment with a plan of action. Chest X-ray, nebulizer every four hours, mild anti-biotic every other day for 30 days.

Now, I have been at home with by boy for five days. He's vomiting, listless, sleepy and still coughing. Plus, I missed the doctor's call this afternoon and didn't get the message until it was too late to call.

So back to being stunned. this happens more lately. I cannot believe this is the life I live. I cannot believe I cope with this on a daily basis and am still sane. I get glimpses of me in the hallway mirror carrying Dermot, and I stop in my tracks. Stunned. THIS is my life. There's no denying it.

Drool, vomit, seizures, mucus, feeding pumps, oxygen tanks, wheelchairs, medications, syringes, nebulizers, ramp vans, insomnia, sore back.