Wednesday, June 23: Update

Tiffany got to have a girl’s night out last night. Autumn, Heidi, my sister-in-law, my mom and Tiffany went to see the new Karate Kid. The girls have been wanting to see it and Mommy was glad for the distraction.

My distraction tastes have always been for higher brow fare that makes me nostalgic for Colorado: I’ll be spending my evening with my friends Harry and Lloyd of Dumb & Dumber. The movie isn’t for everyone but it has my number and still makes me laugh. I need to laugh.

Claire is settling into a sleeping routine at OCH. She falls asleep without pharmacological assistance around 8:00 PM until around 4:30 AM. The doctors were stacking her meds around 9:00 PM, so when 4:30 rolled around we couldn’t give her anything to calm her down. We will be trying a new schedule tonight that reserves one of the anxiety meds for midnight hoping it carries her through to a more reasonable morning hour. We hope it works so both she and the respective overnight caregiver can get the rest they need.

Claire did well today and wasn’t as agitated as yesterday. We continue to hope the agitation will moderate soon. It feels similar to he time we waited to extubate Claire: we can’t move forward until she clears this hurdle and it drives some high anxiety. I anticipate we will experience a couple days of relief when she is more calm and less sensitive. We need those days.

There’s not much more to report. We thank everyone for the offers to help. We hope to have a better idea of our needs in the next few weeks. For now we are thankful for your offers, prayers and support.