Monday, March 6, 2017

Passing the Baton

It's been a tumultuous few days here, with the brunt of the craziness happening late this afternoon. Mira has been having some rough seizure days at school and at home for the past few weeks. Last Thursday, she had three tonic-clonics at school, all within a half hour or so, which is the second myriad of clustered seizures she has had in the last few weeks. She also had another episode yesterday at home, where she had an intense tonic-clonic, which made her very lethargic and irritable the rest of the day. This morning she seemed to be feeling better. Although, I snapped a few pics of her, since she had this very skeptical look on her face, as though she wasn't sure what the day was going to bring. Funny thing is, neither did I.
The day started off with her bus having hydraulic problems, which they parked right in front of the house, but ended up ordering a replacement bus to show up, which took about 45 minutes. Mira ended up back in her bed until the new bus arrived, as she tends to get impatient and cranky in the morning when her routine is off. Despite the rough weekend, she had a decent day at school, no seizures or activity, but she did have some bouts of irritability. The real fun began about an hour before I came home from work.

Not to go into any great detail, as the story involves a lot of poop, but I will just say that Mira had an 'episode'. Keeping Mira regular is always a challenge, with a majority of the struggle ending up on the constipation end, but today, we had the exact opposite problem. When this happens, it quickly becomes a two person job and unfortunately, Sarah had to fend for herself as I was still at work. Diaper changes and the aftermath of a blowout can be traumatic, exhausting, and of course, extremely messy. Thirty minutes and some seriously soiled laundry and bedding later, Sarah had reached the tipping point by the time I got home. Mira was extremely irritable too, since she was most likely hungry after seemingly evacuating her system, based on the amount of cleanup that was involved. Sarah simply 'passed the baton' and took a much needed break by getting out of the house for an hour. Mira continued to cry until I could get 3 bottles in her and got her in the bath.

Caring for Mira is utterly exhausting some days and coming on a Monday, after getting back into the swing of work and school, compounded the exhaustion and tolerance level for Sarah, myself, and Mira. I think we were all dealing with some serious caregiver fatigue today. Today was a pretty crappy Monday, no pun intended.