he's gone

Things took a turn about 2 hours ago.  It's not looking good.

"Where have you been?  I thought you were NEVER coming back! Don't you EVER do that again!" Jimmy complained this morning when I returned to the hospital after a delicious night's sleep. His hands were in the mittens again, and his speech still garbled, but clearer than yesterday and more coherent.  The brain fog should abate soon.  Shona the sitter said Jimmy had been up to his old tricks last night, hence the mittens again. In response to one of my recent blog posts about his nocturnal antics, Tish Johnson texted me, "Sounds like you were wrestling a bear all night!"  Well put.  That's exactly what it's like, and it's exhausting.

When I was in the gift shop a few days ago, I saw this lit-up box that had fake tropical fish swimming around a reef. Desperate for anything to soothe or distract Jimmy, I bought it. Coupled with some soft instrumental  music I found on a TV station, it has a mesmerizing effect. Whatever works.

The days run together so, it's hard to remember what was yesterday or today or the day before...they've all been much the same.  Delirium has made communication difficult since Jimmy began taking the steroids, but his oxygen intake is better.

Yesterday Jamey hired a sitter to stay with Jimmy last night. This was the first time in the 7 years he's been sick that I've left him like that.  She came at 10PM and when I came back at 9:30 this morning, Jimmy had the mittens on, was talking gibberish and not at all happy. Shona, the sitter, said that they'd had a busy night, with Jimmy's pulling the mask off, trying to pull the catheter out, and attempting to get out of bed.

I felt badly leaving him last night, but not so badly that I couldn't sleep eleven hours straight.

Boy, did I call it last night!  After sleeping all day yesterday, Jimmy was rocking and rolling all night long.  He was agitated and jittery, probably from the high-dose steroids, and I'll bet I had to get up 100 times to put his oxygen mask back on.  He tried to get out of bed several times, once pulling the oxygen tube out of the wall in the process.  Of all the drugs I took when I was on chemo, I hated the steroids the most.  They are mean, mean, mean.

As you might expect, Jimmy is sleeping like a baby now.  He is getting 2 bags of blood.  His hemoglobin is 7.5, hematocrit 24%, and platelets 102.  I'm going to speak with the doctor today about how sedated Jimmy is.  He has a Fentanyl  patch for pain, but he is so sensitive to medication, and I'm wondering if it's a little too strong.

Happy dog

Thanks to my wonderful brother and sister-in law, William and Pam, one of my big worries has been laid to rest: my precious Andy is living with them while we're gone.  He's having a ball with his cousin Tulee and now I fear that he won't want to come home!

Watching "Cops" with William

Andy and his good-looking cousin Tulee at the dog Park

Today

Yesterday Jimmy was sharp and alert, but he's slept most of the day today, and is much less responsive.  I'm surprised because he got 1000 mg methylprednidone - really high-dose steroids - this morning in an effort to resolve some of the inflammation in his lungs.  I expected him to be bouncing off the walls, but so far, he's calm.  It may be a long night though, like with a colicky baby that sleeps fine during the day, then cuts up all night long.

During the past 2 weeks, Jimmy has eaten practically nothing.  After he got off the ventilator, he could eat pudding consistency  foods, but his intake has been so small, and yesterday they said nothing by mouth, as he is a high aspiration risk. This afternoon he started on TPN (Total Parenteral Nutrition) which is administered by IV.  It contains carbohydrates and protein and fats and electrolytes - total nutrition.  Maybe this will pop him up a little.  How can someone regain strength if they're not getting any fuel?

This big old bag of milky-looking stuff should supply Jimmy with all the nutrition he needs

I'm hopeful that we are on an upward trajectory, and that inch by inch, we can make our way back to a reasonably good place.