daily update 10.05.2010

Today, Chad was full of energy. Again.

When I arrived this morning, he was sitting in his recliner with his parents near the entrance of the Hospice House.
Looked good. He patted my hip, as if to say hello.
We had apparently had a busy morning already, going outside and such.
So we headed back to the room, hoping he would rest.

No, he wasn’t really interested in “resting”.
His mom washed him up and his dad trimmed us his hair and shaved the back of his neck.
At that point, he was clearly tired.
The staff out him back in bed, but he wasn’t really interested in napping then, either.

He ate a small amount of oatmeal and we thought, surely, a little food in his belly would help him doze off.
No.

His parents left to get some breakfast, and I thought he might relax a little with less people in the room.
No.
He scooted. He shifted. He wiggled. He twisted.
He did this:

Feet at the headboard. Head at the footboard.
He wanted a change of scenery, I guess.

Shortly after that, I snapped this with my phone – Chad trying to get out of bed. Again.
He’s like a Houdini, I swear.
As soon as he gets “settled” in bed, he’s ripping off covers and trying to get out again.

At this point, with both legs thrown over the rail, I called the nurses in and asked them to help me get him back in bed the right way.
Surely, using all of this energy trying to get out of bed was causing some level of fatigue.
No. Way.

While we tried to convince him to get some rest, he didn’t want to.
So, we put him in the wheelchair and I took him for a stroll outside.
The sun was shining, the air was crisp. It was definitely nice.

He did seem tired after our walk, so we got him back in bed.
He did doze off for a little while, but not very long.
His parents returned and he was back to his routine of bed-hopping.

The staff tries to turn him several times a day, to give his body a different position in bed.
Well, he doesn’t really like that.
Surprise…

The staff has their weekly meeting about patients each Tuesday morning.
Today, there were some changes made to Chad’s care.
First, everyone decided that Chad’s pain management wasn’t quite effective for him.
Last week, when he was unable to swallow, suppositories were the only way to effectively treat his pain.
This week – we need something more.
So, they decided it might be best to add a subcutaneous line to administer morphine and Ativan.
This is a switch back to morphine, as he was receiving MS Contin last week.
We explained it to Chad and he approved – so, the line was placed.

It was placed into the fatty tissue on his upper left arm. There is a thin needle placed under the skin, with a tube that leads out, much like my insulin pump. The tubing allows medication to be given quickly – and less traumatically, when Chad needs it. He doesn’t have to roll over or even be awake. Which should make things easier on everyone.

He also is returning to the Fentanyl patch, which was a discontinued a couple of weeks ago.
I actually thought he was still wearing it until recently; I missed the conversation when they discontinued it somehow.
With the chills and sweats he was experiencing regularly, it was hard for the patch to stay on; and this time around, they plan to anchor it with Tegaderm.

We also were switched back to general in-patient care today, since they are attempting to control his symptoms again.
This is only important as far insurance billing goes. It simply means that our insurance company covers GIP (general inpatient) care at 100%. Yay for that.

—

He received his first doses of morphine and Ativan via the sub-q line. And we all waited for him to rest, finally.
But no.
He was still climbing the walls.
He didn’t know where he wanted to go – he just wanted up.
And he just doesn’t get – or understand or remember – that his legs will not support him.

We wondered if his lower back was bothering him, since he was so uncomfortable (it seemed) in bed.
I mentioned that Chad really enjoyed his jacuzzi bath a few weeks ago and it calmed him down, allowed him to rest afterward.

He did get in the tub.
Got a proper bath, with jets and bubbles and a really nice hair wash.
The bath did the trick and he was dozing off by the end.

It takes quite an effort to get him in and out of bed – and the bath was no different.
After all the moving around to and from the bath lift and getting dressed, he finally slept.
For an hour.
I took that time to rest a bit myself.
It wasn’t quite enough for me.
And I just cannot understand how Chad is still going so strong with no decent amount of sleep since Friday.
He is sleeping – but still the catnaps. There is no long period of sleep, recharging or rest.
I just don’t understand.

He woke up and had a few visitors.
Still trying to get up – even trying to get his visitors to help him out of bed when the rest of us told him no.
He doesn’t take no for an answer.

He started to complain of head pain, so I asked for another does of morphine.
And it took a while to kick in.
I just really don’t understand how he was so AWAKE after all the medications he was given today.
It’s like his brain receptors are just not processing the medications as they should be. He feels pain. But isn’t able to feel relief.
It’s insane.

He finally slept.
I used the opportunity to step out and get dinner and returned about an hour later.
He was just waking.
Again.
Still, no long period of rest.

He was touching his head and nodded when I asked if his head was hurting.
More morphine.
And he fell asleep, again.

—

This evening, he’s spunky.
Still.
He ate some chicken nuggets and corn.
Drank a Pepsi.
And is sitting in the hall with Sabally, just hanging out.

—

I am glad he’s still having good days.
But I must admit I am so confused.
I am on an emotional roller coaster that seems to be never ending.
Actually, I think I’m on the part of the coaster that causes you to raise your hands, scream and try not to vomit all at the same time.

Day by day.
Step by step.
It’s all we can do.

So, that’s what we’ll do.