Writing during the late-night/early morning hours of my shift monitoring Liam while he sleeps is proving to be more difficult than I thought for any longer, more thought out, essays and blog posts. Hard to get a real flow or rhythm going trying to concentrate on writing but at the same time paying attention to the rate of Liam’s ventilator or any signs of seizure activity. Blathering on about my day seems about all I can manage lately. So instead of doing the writing I know I should be doing I’ve taken to doing more reading and the watching the occasional episode of Doctor Who on the Netflix. A shame really because I have notes on ideas for all kinds of real content for the blog, I just never seem to get around to it all. How could I get around to it, really? I mean, the library had volume 2 of Alan Moore’s League of Extraordinary Gentlemen when I stopped by yesterday? (It’s really, really horrible by the way.)
The weekend has been – in a word- mellow. Liam woke early saturday morning into a fairly severe seizure. It broke on its own without the intervention of his Diastat (a derivative of Valium given to break his stronger seizures) but the rest of the day Liam spent alternating between lightly sleeping and barely awake. No surprise there though, as the serious events are usually followed by a day or so of recuperation. My mom came over in the afternoon to babysit while Karin and I did a bunch of organizing and cleaning projects around the house. Even though we never left the house it was nice to hand off Liam’s care for a few hours to one of his grandparents instead of a nurse.
Sleepiness throughout the day made getting Liam to sleep at night a tough task indeed. When Liam wants to sleep all day sometimes the best thing to do is to let him. Exhaustion can bring on even more seizures so keeping him awake simply because we want him asleep at night can occasionally cause more problems than it solves. Anyway, none of the Olson’s slept very well last night.
We all woke up cranky this morning and as soon as Karin and I realized that Liam hadn’t pooped in two days it was time to pull out the big guns and give him a dose of senacot with his daily dose of miralax (a cocktail we affectionately call Liam’s poop-soup). Not to worry though, positive results were achieved including a maximum amount of odor and messiness about 8 hours later. Elevated heart rates and high inspiratory pressures all day long were instantly reduced back to normal levels after The Boy’s movement and he was comfortable and happy by bedtime. Bit of a gross update? Sure, but a necessary one. After Liam’s bowel resection any slowing in his digestion is cause for alarm. Since his initial discharge from the PICU in October of ’09 we’ve spent more time back in the hospital for bowel problems than we have for respiratory or ventilation problems.
Crankiness aside we still managed to have a fun family afternoon putting up our christmas tree while watching the Patriots toy with the Chicago Bears. While I never want to see Liam uncomfortable the remedy to many of Liam’s complaints over the past two days required high doses of hugs, hand holding and snuggling on the couch with a good book and a blanket. Crankiness or no, it ended up being a pretty awesome two days for me.