Daily Update 9.2.2010

I visited Chad today without the girls.
One of the nurses called me shortly before noon to let me know there were a few changes she thought I be aware of.
He was running a low-grade fever again. And his right leg, the non-working one, was changing colors. I’ve noticed that his right foot and ankle are a little discolored in the evenings – kind of purplish-gray. It’s been that way for a while. And he was having a lot more tremors activity on both sides. That is relatively new.

Today, when I arrived, I noticed his leg was definitely different in color. It was more pink, even red in spots. And it was his entire leg, not just his foot and ankle.
The fever responded to Tylenol – but was back later in the day.

He doesn’t particularly care for the catheter tubing and tries to pull on it whenever he remembers it’s there. Who can blame him there – I know that has to be annoying.

Since school started with Carys, I haven’t been at the Hospice Home early in the day – it’s been in the early evening – and I usually miss the staff physician making rounds. I did catch her today though, thankfully.

She has been making changes to Chad’s seizure medications; trying to find a balance that keeps his mood leveled and his seizures away.
We also discussed his leg and fever. She feels he likely has a blood clot there (DVT). Given the weakened structure of his brain tissue from the tumor growth, it’s not very wise to address the clot with blood thinners. It’s very likely that he could suffer a brain bleed, which is something we do NOT want to happen.
Also, Chad ended blood thinners as soon as we were done with traveling this Summer — it’s not something he wanted to continue, even though he knew he would be at increased risk for future blood clots.
So, he’ll be treated for the symptoms of the clot – pain. If the clot moves, we would know by the different location of his pain. Sometimes though, that’s not the best way for us to figure anything out, as Chad’s having a lot of difficulty explaining locations and intensity of pain.

The doctor has also added a sleeping aid at night, to try and help ease the restlessness and agitation he feels at night.
I’m keeping my fingers crossed that it helps him rest a little more.

When I called to check on him this evening, around 9pm, the nurse said he was still wide awake, but not agitated. She also noted that he was having a little difficulty swallowing. I noticed he coughed quite a bit today while trying to drink, almost like he had “forgotten” how to swallow liquids. It sounded like each swallow was going down the wrong pipe — which happens to all of us at times. It’s frustrating – and a little scary to get choked up like that.

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Carys is doing great at school.
But she is having a hard time at home, emotionally.
I have an appointment for her to see the children’s counselor early next week.
She is six. And I am so sad for her that she has to go through any of this. It breaks my heart.

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Cailyn had preschool orientation today and I really liked her teacher!
I know she will have a great year with her new friends — and I can’t wait for her to start school next week.
She is a little nervous, but she will warm up quickly. She’s really become a social butterfly in the last year or so.