Weekend Roundup 10.27 – 11.02.2010

Yes, I realize it’s Tuesday evening.
And that I’ve been scarce for a week.
I actually haven’t even turned my computer on since my update last Tuesday.
I thought about it, but I was just too exhausted or busy to actually write.

And before I forget — please be sure to join us on Saturday for StepLively, a Walk for Hospice of Wake County.
Details can be found to the right on the sidebar.
Donate, walk, do both! I’d love to see you there!

Chad has been about the same, not sleeping well at night (if at all), and not extremely responsive during the day.
He gets a little more verbal in the early afternoon, but not a lot.

Over the weekend, he had a brief conversation with one of the nurses that really struck me – poignant.
At this time, he hadn’t slept for three nights and she was jokingly asking, “what’s up with that?”
He looked at her, I’m told, brushed his hand across his face, made an expression as if to say, ‘you don’t know?’ — and then clearly stated, “It’s death.” He was done talking after that. She even tried to engage him in further conversation about his death, and he just wasn’t interested in talking about it anymore.
It’s been a few weeks since he’s mentioned anything to me about dying, so I was a little shocked that he brought it up again.

The mucus is coming back. He is constantly clearing his throat or coughing.
Sometimes, he is able to get it up. Sometimes not.
Today, I cleaned his mouth out when he started to gag on it and I just felt so bad for him.
He’s not had a fever, which is good. But it’s something that we all are waiting for, too.
The fever would be a response to his body shutting down and trying to “fight” an infection, in this case the natural progression of the disease.

He is so thin. I know I’ve said that before, but each time I see him, it just hits me.
I would be shocked if he weighed 150 pounds. He went into hospice weighing about 200, maybe a little less.

Late last week, I asked him if he wanted something to eat, as I was going to get some lunch.
He said yes, and then quickly changed his mind when I gave him some choices.
I directly asked him if he was hungry, and he nodded yes. Then added, “But I am not eating.”
I then inquired if he was not eating on purpose.
And he nodded yes.
I guess it’s the one thing he feels like he can control at this point.
Even though his body is not receiving the hunger signal, he is still refusing food.
He last full, decent meal was the first weekend of October, when he had the sudden burst of energy after the week when we were told he only had a few days left, at best.

I never know what to expect when I visit him each day.
For the most part, recently, he has been quiet. He may say a few words to me here and there, but we are definitely not able to hold a fruitful conversation.
On Saturday, he could not remember my name. He knew who I was, but my name just escaped him.
I left it alone.
When I called to check on him that night, the nurse told me that he said my name clearly, like he wondered where I was.
He does know me. It just may take a while for it to come to him.

He also spends a lot of time with his eyes closed. He appears to be sleeping, but will respond to requests by squeezing my hand. All with his eyes closed.
It is becoming increasingly more difficult to rouse him from sleep. I always lean in to kiss his cheek or forehead when I arrive, and he used to wake up after that. Now, he usually doesn’t budge. The nurse also indicated that it is hard for her to wake him for medications most of the time.

Currently, he is on 125 mcg of Fentanyl (pain patch), Roxinol (liquid morphine), Depakote (for seizures) and Ativan (anxiety, seizures). Depakote is the only one that is administered as a suppository – the rest are oral or by port.
I am thankful that he is not having to take the amount of medications he was before – and I’m sure he is thankful for that, too.

I dressed the girls in their costumes Friday and took them by to see their daddy.
They were excited to show him.
He was sleeping when we arrived, and even though I tried to wake him, he didn’t stir.
His eyes fluttered slightly when each of our girls gave him a kiss and told him about their costumes.
Still with his eyes closed, he reached out with his left arm in an attempt at a hug.

I took the girls to the Clayton downtown Halloween parade – which is just a ton of kiddos in costumes receiving candy from the downtown businesses.
Carys had a Girl Scout Halloween party Friday night.
Cailyn went with me to have dinner with some of my friends.
On Saturday, the girls went with my aunt to trick-or-treat.
I stayed home to catch up on sleep and visit with Chad for a longer period of time.
On Sunday morning, I visited with him and then made my way to lunch with my extended family. It was like a mini family reunion and it was great to see everyone.
Sunday afternoon, my dad & I took the girls to the Fall Festival at church and then trick-or-treating in our neighborhood.
Let’s just say that I shouldn’t have to buy any candy until 2012.
There is SO much!
The girls had SO much fun, too.
Cailyn wore three different costumes  Рa princess (pink dress), a princess (purple dress) and then TinkerBell.
Carys was a pirate – all three days.

Anyway – enough rambling.
I know you want to see my little punks — so here you go!
Have a great week, and I will try my best to update this week.


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3 Responses to Weekend Roundup 10.27 – 11.02.2010

  1. carla says:

    So good to read your blog. I know it is hard to update on a regular basis. I LOVED the pictures! The Jones's are going to miss you as we are going out of town for a week beginning Saturday. Know that our hearts are with you.

  2. amy says:

    The girls & Lucy were way to cute!! I've missed reading your blog every day, but I know you must be so tired & drained. Thinking of you guys constantly!!!

  3. Mamajoni113 says:

    Love and kisses to the family. Our thoughts and prayers are with you and yours, always

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