Daily Update 9.14.2010

Yesterday (Monday), Chad had a quiet day.
He ate a good breakfast, scrambled eggs, sausage and toast.
He didn’t each much the rest of the day and was having some pain in his back, as well as the normal head pain. He did drink fairly well though, which is good.
I visited for a few hours, but he was sleeping most of the time.
I did notice that his coloring was off yesterday. His hands were bluish-gray and his face was extremely pale.
He had some visitors – a few of his former coworkers. He did wake up briefly to acknowledge they were there, but indicated that he “was so tired.” So we all left about the same time. I didn’t hear his voice much Monday – just a few spotty “yea” responses.
I called to check on him around 8:30pm, and heard that he was resting peacefully and was very quiet for most of the day.
Today I learned, however, that he had a period of agitation in the later afternoon, around 4:30.
He was sitting at the nurses station in his recliner, as is his routine. We’re not sure if it was the lights or the coming and going of the staff that upset him (we typically keep his room pretty dark and quiet). One of the nurses handed him a flashlight to hang on to, because he will pull at his catheter tubing if he’s not distracted. When he got annoyed, he apparently started wielding the flashlight as a defensive item. He grabbed at one of his regular nurses and his eyes were huge, wild. He was definitely frightened by something and wasn’t able to communicate his fears.
Poor guy.
He had his regular medications, which include a nightly sleep aid, and I’m told he had a restful night.

Today (Tuesday), my mom and I visited after we dropped the girls off at school.
She went in before I did, as I stayed in the hall talking to his nurse about the previous evening.
As soon as he saw my mom, he began looking for me and wanted out of bed – immediately.
We asked the staff to transfer him to his wheelchair and we strolled outside for a while before it got too hot to do so.
He really loves being outside in the fresh air.
Being outside left him tired though and he could barely keep his eyes open, so we took him back in for a nap.
We left shortly thereafter.

I snapped a quick photo with my camera phone after our walk. I know many of you are interested to see him, but haven’t (or can’t, due to distance or other commitments) visit. I just wanted to share this with you.
And yes, he’s definitely still a NC State fan — and a fan of the NCDOT WZTC Rodeo (the hat he’s donning).
He’s not much of a hat guy, but I did convince him to wear it briefly. The sun was so bright – and I know that bothers his eyes.

Around 7pm, I said goodnight to the girls and made my way back to the hospice house to spend the night with Chad.
Carys was especially upset. She is very clingy to me right now, even hysterical if I am not in sight. She had to call me from school yesterday before lunchtime, just to say hello and make sure I was there – somewhere, anywhere – and that she could reach me.
She is doing fairly well, and has regular visits with the grief counselor here at hospice and the student counselor at school.
She did have a moderate croup episode last night, which landed us in the cool night air at 2:30am. She seemed to be doing much better today, but I suspect she is on the verge of having a major back-to-school cold. Yucky crud.

Cailyn is doing extremely well – very nonchalant. She understands way more than I give her credit for. I mean – she’s only FOUR – but she has a firm understanding of what is happening and why she can’t see daddy anymore. She is definitely testing her limits with me, trying to see what she can (and cannot) get away with. Unfortunately, I am so tired and torn with my time that I give into her frequent whining. I know it’s my undivided attention she craves, and it’s just so hard for me to juggle it all.

I am….hanging in there. I don’t even know the correct phrase to use. I am doing the best I possibly can, putting one foot in front of the other, and trying desperately to find a pattern in this shadowy maze.

I was so excited when Chad had a few really good days late last week.
He was talking so well, and it was just so nice to be his wife instead of his primary caregiver during those times.
It’s freeing to focus my attention on spending quality time with him, instead of making sure he has his medications. The medication schedule was really overwhelming me a few weeks ago.
I thought I would share the medication list her’s currently on – a few of my readers have asked me what he’s taking…so, here’s the current list to the best of my knowledge. A few of his long-term medications (meaning drugs he’s been on for months prior to the move to hospice) have been discontinued in order to try something different in it’s place, or because Chad didn’t want to take them anymore (steroids, blood thinners, Haldol, etc.).

Keppra – for seizure control
Depakote – for seizure control/behavioral outbursts
Lamictal – for seizure control
Restoril – for sleep
Ativan – for anxiety/seizure control
Morphine – for pain
Fentanyl – for pain (the patch)

He receives these drugs on a regular schedule every 4 hours, with the the exception of morphine. He can have that every hour as needed. The sleep aid is relatively new, and I am surprised, frankly, that it seems to be helping. We went through so many different sleep aids with is neurologist since November 2007 – and nothing seemed to help. I think he may have tried this particular drug early in our journey and it didn’t seem to make a difference…but it does now.
And that’s all that matters.

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I’m absolutely baffled that we are quickly approaching the one month mark since we made the move to the hospice house.
He came in on Tuesday evening, August 17. It just doesn’t feel like that much time has passed. It has definitely been a whirlwind; traveling 35 minutes one-way  to see him every day, sometimes multiple times daily; shuffling the girls to school; trying to will myself to sleep before 1am; trying to make myself eat; trying to remember what a routine is when we really don’t have one right now; trying to reassure our girls that we will be okay. Eventually.
It’s hard, I won’t lie. But I am thankful that we have a huge support system and that I have, unfortunately, had time to prepare for these moments. It’s definitely not something I wanted to happen, but I feel extremely fortunate that Chad & I were able to discuss the harsh realities of the progression of the disease, his wishes and  desires before it got to a point where he couldn’t effectively communicate.

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Right now, it’s about 9pm, and he is sleeping soundly. His sleeping and waking hours vary; sometimes he is more alert first thing in the morning. Sometimes, it’s much later in the afternoon. He naps frequently, ranging from 20 minutes to 2 hours. We consider a “good” night one in which he stays asleep for three hours or more. He usually tries to get out of bed around 2am, and then again around 5am.
He hasn’t had a fever since last Wednesday night, and it’s creeping back this evening, unfortunately.
The staff here is just excellent with him, preserving his dignity throughout this unfortunate, heart-breaking process.
I don’t know how they handle doing this job every day, as I’ve witnessed so many different patients enter these halls for such brief periods of time. I’ve gotten to know so many of the staff members personally and I am just blown away by their genuine concern, support & admiration for Chad. They are special, special people.
As are many of you, our readers.

I thank each of you for reading my account of this journey.
I thank each of you for praying for our family.
I thank each of you for showing us that support comes in so many different forms.
I thank each of you for allowing Chad & I to share our lives with you.
And I thank each of you for genuinely caring – and helping – in any way you feel necessary.