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.

Jimmy's friend John McNeil from Thomson, Ga., was visiting Jimmy when I got back to the hospital today, and  Jimmy was beaming.  Seeing his old buddy did him a world of good.

Jimmy's more alert, and is pretty sharp mentally.  He continues to have issues with his breathing, and a CTscan last night showed something going on in his lower left lung.  They've started another round of antibiotics and are going to give him high dose steroids to try to resolve it.  He still isn't swallowing properly and is not getting adequate nutrition, so more intravenous supplements are being discussed.

Dr. Lonial came today and clarified a lot of things for us.  We have been getting a lot of conflicting opinions that have left us confused, but Dr. Lonial is optimistic and has a plan.  He sees the big picture.  He is our quarterback and we are happy to let him call the plays, and Jimmy and I will fight our hearts out to win.

Jimmy slept for the first part of the afternoon, then was alert and focused for several hours after he awakened.  We had a good laugh at some of his hallucinatory "memories."  Among other things, he thought somebody had stolen his beloved green Jaguar convertible and wrecked it; he thought we had been to New York in the past few days; he thought some famous actress, he couldn't remember her name, had been kicked out of the ICU unit where we were staying, for urinating on a table. He said these recollections were as clear and as real as if they had actually happened, not hazy and disjointed like in a dream.

I am back at the hotel and Jamey is spending the night with Jimmy again.  Jamey has tried to get me to do this for the last two weeks, but I wouldn't hear of it, but I'm finally admitting to myself that I MUST do it.  Neither Jamey nor I are comfortable with the sitter idea.  Jimmy enjoys having Jamey with him, and the truth is, Jimmy probably is grateful for a break from me. I've become the nagging Bad Guy, constantly saying,"Put that mask back on," "Stop pulling on those tubes," " Eat this," " Stop trying to get out of that bed."

I AM trying to take care of myself. I'm eating healthy food and eating regularly.  Back in 2008, I ate Snickers bars to alleviate stress, but that's a bad plan, and this go-round, I just cry a lot.  Crying's good.  It really makes me feel better as long as it's not in front of people.

This hotel has a little exercise room right down the hall from my room, and I've been going there most days, lifting some light weights and using the elliptical machine.  It's all I can do to do 5 minutes on level 1. I burned a rip-roaring 30 calories, but it's better than nothing and it's an excellent stress-buster.

This blog is good therapy. I have been following several other blogs for some time now, written by cancer patients or their caregivers, and it's very helpful to know what other people are going through and how they cope.  Sort of like an online support group.  I don't understand the decision of some, like Tom Brokow , who has chosen to keep his treatment "private" when sharing can be so helpful to others in the same boat. Oh, well, like they say, "That's why there's chocolate and vanilla..."

"The Sleeper" by  Pierre Auguste Renoir

"O magic sleep! O comfortable bird
That broodest o'er the troubled sea of the mind
Til it is hushed and smooth."
                               -John Keats,  Endymion


I slept over 12 hours straight last night.  The room was quiet and dark and there was no one disturbing my rest.  I'm back at the hospital and feel  much better for the break.

Jimmy is napping peacefully, but is otherwise the same as yesterday.

I finally gave in and asked Jamey to stay with Jimmy tonight, and I'm spending the night at the hotel.

Not one of our better days

I hope today gets better.  Yesterday was a big day for Jimmy, and he was exhausted.  I expected both of us to get a good night's sleep, but it was not to be.  Jimmy talked all night; maybe he was talking in his sleep but it was gibberish that went on and on and on.  Several times he pulled the oxygen tube out of his nose and his oxygen saturation dropped way low and he started gasping for breath. I'd get up and go put it back on him, but in a little while he'd do it again.

He started the morning confused and out of it, but able to answer basic questions. I managed to feed him about 3 oz. of a nutritional custard-y thing they brought in, and a little juice with a thickener in it that he can swallow more easily than plain liquid.

At about 11, a physical therapist came in to work with him to help him regain some strength.  He was able to follow commands, raise his arms, squeeze her hands, and then she got him to sit on the side of the bed. By then he was struggling to get his breath, and his lips and fingers were turning blue.  I grabbed my little oxygen meter thing and put it on his finger and it showed an oxygen level of 68 and a pulse rate of 132.  The therapist freaked and called the nurse who called other people in. They put a mask on him and gave him albuterol and cranked up the oxygen and finally got his oxygen saturation back to a normal level.

After everybody left, Jimmy was resting, still wearing the mask but then starting taking it off again.  I tried to put it back on him but he wouldn't turn it loose, and would slap my hands when I tried to take it from him.  He tried to get out of the bed, saying he was ready to go home, so I had to call the nurse to help me.  He's agitated and combative and having hallucinations.

Jamey came in about 12 and I left him with it.  I may for the first time have to get a sitter who can stay there all night and stay awake and keep Jimmy safe.  I am so tired and am afraid to go to sleep for fear he'll get the mask off again. I really don't know what's going on right now - maybe it's a 2 steps forward, 1 step back sort of thing. I'm going back to the hospital soon to try to sort things out.

New digs

We cleared two hurdles today: Jimmy was deemed fit to be moved out of ICU and back to 8E, and he's swallowing well enough to eat soft foods, like ice cream, puddings, pureed soups, grits.  Jamey and I were hovering over him this evening, feeding him tiny spoonfuls like he's a baby bird.

I guess comfort is relative: an ordinary hospital room seems palatial after having lived in ICU for so long.  We have windows! We have a bathroom! We have a closet! I can sleep on a sofa instead of a chair!

 And simplicity isn't half bad.  My wardrobe consists of three Brooks Brothers non-iron shirts, two pairs of Land's End easy-care cotton pants, a cotton sweater vest and some underwear.  When things get too dirty, I take them to the 7th floor laundry room and wash them.  It makes me want to go home and donate 90% of the contents of my closet to the Salvation Army.

From our humble abode in ICU...

...to the Taj Mahal on 8E

We made a lot of progress today.  Jimmy graduated from the despised oxygen mask to a much more comfortable nasal cannula. He was more alert and his speech is easier to understand, but some sort of a test is going to be done in the morning to see if he can swallow properly; if he aspirated something into his lungs at this point, it could be disasterous.  He hasn't had anything to eat or drink by mouth in over a week, and he looks awfully thin and frail.  If he can't swallow, the feeding tube will be reinserted. (It was removed at the same time the ventilator tube was taken out.)

Late this afternoon, Jimmy started struggling to sit up, and Jamey and I helped him to sit on the side of the bed, then with the help of two nurses, we got him into a chair.  He sat there for about half an hour before we got him back into the bed, exhausted. He may be weak physically right now, but he has more mental strength and determination than anybody I've ever seen.

There's an excellent chance we will move back to a regular hospital room tomorrow.  Today I felt like I was witnessing a miracle.

I got back  from my afternoon break to find an improved Jimmy.  He's being bossy and he's trying to flirt with the pretty nurses and he's smiling some. All positive!

It's 11 AM and I wish I had something positive to report, but things are about the same.  Last night was another Battle of the Oxygen Mask.  I'll bet I got up 20 times to push it back over his face. Anne, our A+ nurse today, says if he doesn't stop, we'll put restraints back on his hands.

We were able to communicate more with him yesterday, but he still comes and goes.  It's difficult to understand what he's trying to say, as his tongue seems to be swollen.  I continue to talk to him a lot, and he makes appropriate responses, and he gives the right answers  to most questions.  Today when he was asked what today's date is, he said, "March......twenty...."  But I couldn't have said what today's date is either.  It's strange how you lose all sense of time up here.

Jamey just arrived and I'm going to take a break.  I'll update this evening.  Pray for something positive.

Jimmy hasn't made any progress from yesterday that I can see, but on the plus side, he doesn't seem any worse either.  We were so in hopes that he would be moved out of ICU today, but that's not going to happen.

Last night was fairly difficult, for me, at least.  Jimmy was "feeling no pain," floating around somewhere out in the stratosphere on something.  He was talkative and if he pulls through this, I'm going to enjoy telling him some of the things he said. He kept pulling his oxygen mask off which made his oxygen saturation drop like a rock, so I spent most of the night sitting by the bed, holding his hands down and pushing the mask back up.  I guess I could have asked the nurse to restrain him again, but I kept thinking he'd calm down.  One of the better nurses was not on duty last night.  I think she was AWOL.

Jamey is with Jimmy right now and I'm back at the hotel resting for a while.  The hotel keeps checking me out by mistake, and I think the fact that I can't give them a definite checkout date has the people in reservations confused.  I know I have to be out of here by Sunday, because Sunday night they are completely booked. I'll just move back to the hospital, I guess. Surely Jimmy will be out of ICU by then.

Jimmy's off the ventilator, but still very sedated.  He tries to talk to us but it's garbled and most of it we can't understand. He's not a happy camper and wants to get out of here. So do I.

I guess it's human nature to long for clarity, to want there to be right and wrong answers for everything, but this is real life and not a game of Jeopardy.  If I had chosen to not have Jimmy intubated, he would have died, and I would have questioned that decision for the rest of my life.  So for the decision I made, there's no right or wrong, there's no black or white; for better or for worse, it's all about something in between .

Jimmy is responding to commands this morning: squeezing my hand, making a thumbs up sign, and wiggling his toes.  There are still a lot of secretions in his lungs though, and they want him to be strong enough to cough them up before they remove the ventilator tube.

Since I'm a bit calmer about Jimmy, I'll indulge myself with a little whine about living in an ICU unit. Sleeping in this recliner isn't too bad, but I'm awakened often by leg cramps.  William suggested that it might be dehydration, so I'm drinking more water, but the nearest restroom is in another galaxy far, far away, and by the time I make that trek, I'm wide awake, so... if it isn't one thing, it's another...

He's breathing.  He's breathing on his own.  He's still intubated and they will allow him to breathe a couple of hours this way, then turn the vent back on

The nurse told us Dr. Vee wants him to stay on the vent tonight so that we don't tire him out too much, then let him resume breathing independently  in the morning. We're taking baby steps, but this is great progress.