Ice Storm Update

Being stuck at home with this "ice storm" that's coming, I finally have a chance to do some updating. We've been at the nursing home for almost a week now, and let me tell you... we almost left after Day 1. We understood that admissions on the weekends tend to me a little rough, but there was no excusing how rough things went. Dad went almost 24 hours without any medications, meaning he didn't get seizure medication, steroids, or comfort medication. We finally got so fed up with the nursing staff, we contacted our Hospice team who ended up sending a nurse out. Dad was extremely agitated, kicked me out of his room no less than a dozen times because "I was in danger and needed to get out of the way and too naïve to understand". There was really no calming him down and in the middle of all that, he started having seizures. I witnessed at least three and I'm sure he had more than that.

When the on-call hospice nurse arrived, we sat down with her and explained our frustrations and all the problems we were having. She checked in on Dad, then went to talk with the staff and look over his case file. After about two hours, we had the staff educated on what needed to be done, his medicine schedule straightened out, and finally had him resting comfortably. [Side note: if you are ever in the unfortunate position where you need a hospice team, Barnes Jewish Hospice has been absolutely amazing.] After that we decided that we weren't going to leave him alone and someone would start staying over night with him. I stayed Sunday night, Mikayla stayed Monday, Mom on Tuesday, etc. Dad slept all night, despite his roommate yelling about letting chickens out and needing a "diabetes snack" all throughout the night.

Monday things started going better with the nursing staff and we decided to stay where we are at. For the next few days, he'd talk a little while he was awake, have a few drinks of water or ensure, then sleep for a while. His kidneys have been slowly shutting down and his body is retaining more carbon dioxide (or monoxide, whichever one you typically breathe out) which can make him naturally sleep more. He's on a schedule of comfort meds and pain meds and that seems to be allowing him to rest comfortably.

This week there has been periods of time when he'd be very chatty, even if what he was saying didn't really make sense. One night, he said he had to go to Illinois to pick up a mattress and box spring, we had a couple more loads to take to the truck (he wasn't sure where he was going though), and he was trying to build something with a coil. After repeatedly checking on him and reminding him not to pull tubes out, he said "I'm either moving or itching, you don't have to check on me every 5 seconds..!" Apparently I was being a little too attentive.

We did meet with Baue yesterday to start making plans for the inevitable. Overnight, his breathing has gotten more shallow and his breathing rate seems to have decreased. He's not awake very much and the little he does talk, he can barely speak at a whisper. We really don't expect him to hang on past this weekend.

We really appreciate all the visits we've had. Even if Dad doesn't seem to participate in the conversation, we think he can still tell when people are in his room and who is there. We can't thank our family and friends enough for their support.