Notes from Bed 22

(written mostly last night, posted this morning)

What a delightful end to a very rocky day. I’ll start with the good. We just got moved to the Annex which is a step down from the regular ICU. The scary part for me is that the nursing ratio is 3:1 versus 1:1. The fabulous part is that it’s quiet, we can control the lights so we can make it dark, we have a huge window with REAL LIGHT and about 1/3 more space than we had. We don’t have neighbors on either side so it feels like even more room. We keep saying we moved into the Ritz. It’s kind of sick how easily we adapted to life here and how incredible this curtained off 10 x 10 room feels like we could live here for a zillion years.

Today Simon was very extreme- very smiley and laughing for about 10 minutes at a time and then miserable for about 3 hours. Repeat. Our day nurse changed the dressing on his scalp IV and evidently it moved a tiny bit. His IV pumps kept alarming and they ended up having to x-ray him to see how much it moved. It was fine and they didn’t need to do anything else. I keep thinking about how he’s going to have 2 heads from all these x-rays. I think we’re up to 4 at this point. Thank god it’s not 1960 and they’ve figured out how to lower the dose…

He had an echo today and it showed no major change in the pumping function but other stuff looked a little better. They started weaning him down from Milrinone very slowly so he went from 1.0 to 0.9 units today. They want him to gain an ounce a day so they are feeding him more.

Dr. Hunkypants came by and it turns out he’s a chocoholic (he gave me a piece of chocolate!) so now I know how to keep him happy- Trader Joes chocolate aisle, here I come.

All day yesterday and today, his baseline heartrate and respirations have been at a much higher level than the last 8 days or so. All day his heartrate was in the 160s to 170s (it had been as low as 106 when he was sleeping before). This afternoon, he busted a major sweat and we were completely freaked out that he had a fever and an infection. However, five minutes after we moved to the annex, his rates have been dropping and right now he’s at 127. As Laura said, “Simon can heal here”. The other unit was so noisy and stressful with bright lights, loud alarms, suction, post op patients waking up, etc. This feels like heaven by comparison.

The extremes of him being the most smiley and laughing that he's been and then miserable and seeming like he's going to die from an infection/fast heartrate/etc are killing us. I keep telling him "No More Drama!"

My first day at work was actually managable. I ended up having to give a presentation to about 50 people that I thought I'd gotten out of, but it was really fine. It feels like 2 days in one, though, to do 1/3 of my day at work and 2/3 at the hospital. I can do this and we can do this.

Okay, off to start all over again.

p.s. If you come to visit, turn left instead of right, where the reception desk is, and go all the way to the window and we're on the right.