Daily update 9.22.2010

Chad had a rough night last night.
He was sleeping soundly around 7pm, so I ran out to the store to buy some snacks and drinks.
When I came back around 7:45, he was quite agitated.
There were quite a few staff members in the room with him and he looked bewildered – scared – paranoid.
He had just been placed in his recliner when I walked in the door.
His eyes were huge and he was scanning the room, trying to figure out why so many people were involved.
He reached for my hand, which I lovingly offered to him.
There were so many people, about 5, in the room, that I reached over the bed to take his hand.
And he pulled, with a tight grip.
I tried to take my hand and reassured him I was just going to walk to the other side of the bed; I was leaning over the foot of the bed, my back aching after a few minutes. He would not loosen his grip, so I climbed in the bed and sat at the foot, holding his hand the whole time.

He usually wants to wear his NC State Crocs when he’s in his chair, so someone was trying to help him put them on. She got the right one secure, but when she moved for the left leg, he started kicking. He, obviously, didn’t want to wear shoes.
I asked him if he wanted to go into another room for a change of scenery and started to wheel him away from the spot at the foot of the bed.
He instantly reached out and grabbed the footboard. Obviously, he didn’t want to leave the room.
As he settled, he kept trying to scoot out of the recliner. He just doesn’t realize that he can’t bear weight on his legs. They are like jelly, wobbly and unsteady. After telling him at least a dozen times that it was unsafe to stand up, I finally used the side lever to put the footrest up on the recliner. He didn’t particularly like that I had made that decision for him, but he accepted it after a few moments.
He still tried to throw his good leg, left, over the side of the chair. He finally rested it  on the bed, a little higher than the right one on the recliner’s footrest.
I grabbed a chair and sat in front of him, holding his hand. Such a tight grip. For both of us.

One of the nurses admitted that the room was a little crowded, and everyone left to give us some privacy.
That seemed to help – he loosened his grip after a while, but protested by tightening if I tried to move my hand.
He was holding so tightly that my hand was knotting, sweating.
He went in and out of sleep in his chair for about 45 minutes, constantly opening his eyes to make sure I was still there.

At one point, he noticed that I was wearing his wedding band on a chain around my neck. His eyes became fixated on it.
I asked him if he wanted to wear it – and he energetically said, “yes!”
I took it off my necklace and placed it on his left ring finger. He stared at it for a few moments, then drifted off to sleep.

After a while, the staff put him back in bed. He was having a lot of breakthrough pain yesterday evening and had been given a dose of morphine shortly before all of this agitation occurred.
As soon as they got him in bed, they changed him.
And the agitation came back full force.
He was grabbing at the nurses, both of them, and trying to move himself away form them in the bed.
I went to the side of the bed, and tried to grab his good hand, the left one, as he was definitely getting combative with the nurse on his left side. He twisted his grip from mine in order to lash out at the staff – but they were very adept at dodging the fist coming their way.

I moved to the head of the bed and tried to get his attention.  I spoke softly and asked him to look at me, told him everything was okay, and to squeeze my hand instead of hurting the nurses.
He reached up, grabbed me by the back of my neck and pulled my head down. I’m not sure what had him so terrified in that moment, but he was scared.
Calmly, I said, “Chad, that’s not nice. You are going to hurt me. Please let go. No one is trying to hurt you. I promise.”
He loosened his grip a bit, just enough for me to move my head slightly.
Then he reached and grabbed me again.

This time, we both stared intently at each other and he finally let me go.

Something about night time – the dark, the staff change, the tiredness that comes from fighting so hard all day – it gets him almost every evening. The doctor has added a dose of Ativan daily at 3:30 (in addition to his 1pm and 6pm doses) to calm him down. It does seem to help, but does not take the agitation from him completely.

He finally fell asleep for the night around 9pm and would wake up occasionally to make sure I was in the room. This makes me nervous – as I often will step out during the day for an hour or two, just to get some fresh air and feel like a human. I hate the thought that he panics when he realizes I’m not there. Or maybe it’s not ME – maybe he doesn’t want to be alone, period. I just wish I knew.

So far today, he has been in and out of sleep. He is having quite a bit of breakthrough pain and is receiving extra doses of morphine as needed.

He glances at his watch sometimes – and I wonder if he’s looking at the time or the date.
Or both.
Or neither.
As a detail-oriented engineer, I wonder if, somewhere in the depths of his mind, he is keeping track of time – remembering the “timeline” he was given by Dr. T on June 29.

His feet are cooler, and almost dusky gray in color. His nail beds aren’t pink, more like a light violet.
His lips range from white to yellow to slightly pink.
I used to get concerned about those things, but I’ve noticed he often gets the color back for a while.
And then the color fades again.

I have been tracking Chad’s symptoms and guessing at the disease progression.
If you would like to take a look at the “normal” progression of brain cancer, you can do so by clicking this link.
It’s a pretty comprehensive list and helps me understand what’s going on with Chad. So many of the things listed have been happening with Chad for a while, so I take the list with a grain of salt. But it is good to see what happens to others and know that what we experience it not out of the norm, although often out of sequence.

Thank you for your support, prayers and concern.

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6 Responses to Daily update 9.22.2010

  1. Amy says:

    wow, thank you for sharing that link with us. Not sure if anyone else will read it but I did. You guys have been thru so much, I am at a lose of words. I think of you guys everyday, & have you on several prayer list in different states. Sending strentgh & peace to all of you.

  2. Bella says:

    I always look at the picture of Chad in the water at the beach, smiling. Even though I don't know you both personally that's the way I want to imagine him.
    I like to go back and read the entries before Chad became sick. I try to fix the way things were in my mind – so much more to your life together than the disease.
    I bet so many people have told you how strong you are, but if I was there I would wrap you up in a blanket, feed you with a spoon, and let you sleep for a week. I wish I could pamper you somehow.
    Thank you for writing your blog – your grace and patience is inspiring.
    thinking of you both, and your girls.

  3. Maryava11 says:

    I read the link as well, praying so much for strength and peace in all of your hearts. We are all thinking and praying for you guys

  4. Ryan Jones says:

    We love you guys and are always in our prayers and if you need anything just call.

  5. David and Jessica Spencer says:

    We continue to pray for peace for Chad, you, and the girls.

  6. Camillebwatson says:

    Skye my heart is breaking for you all… I am praying for you all and think of you often. Please let us know if you, your mom or the girls need anything to help during this time. We love you!

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