Saturday, January 21, 2012

Just keep swimming

Last night I spent the night at the hospital.  Sheesh! I thought alarm clocks were bad... at 5:30 the IV pump starting going off (horribly loud alarm that kept getting louder) because someone had set it to a timer instead of to when the bag ran out and there was no one to be found!  That was... annoying, to say the least.  In retrospect it was a little funny because apparently there's a little button that says "silence" on the pump and I could have pushed it if I had seen it.  My eyes were so blurry.  You'd better believe I know where that button is now!   Not a great way to start the day but thankfully we got back to sleep for a little while longer.

David did pretty well today, no noticeable negative side effects from chemo which is nice.  I think he was really worn out but he was a trooper and handled all the visits like a champ.  The nurse we had this morning, same nurse we've had during the day since we got back to the hospital, pulled me aside and said that social work wants to talk to us about in home care and hospice care but they didn't want to interrupt when we had so many visitors.  I asked him not to wait and that talking to those people is a priority for us so pull me out at any time or kick everyone out temporarily because that's information we need to have sooner than later.  The oncologist sent over a palliative care doctor to start the ball rolling on that. She talked to us about our options and the fact that nothing was going to change over the weekend but that by early next week we'd have a plan.  We want him home, I've noticed a theme to these blogs.

He continues to regain a little movement and control over his arms and hands.  We're not sure if it's due to the chemo or the steroids but we don't really care as long as something is working to slow the damage.  The doctors don't want us to get our hopes up too high but they like the changes they've seen.  We're hoping to have a little more time with him.  The palliative care doctor said she wants to make sure that he gets home with time to enjoy being home and not wait until the last possible second and then be home for a day before he dies, or worse yet, die in the hospital because we didn't get a plan together.  They don't know that it would be that quick but our motto has been to plan for the worst and hope for the best.  She said that's their motto as well and she was glad to hear us say it first.

David's Aunt visited and from what I heard she noticed a man in the hallway with a cello and sent him in to see David.  I had to run down to the car to get something for Owen.  When I got back Dave was resting peacefully listening to the cello music in bed, I wonder if it reminded him of when he played in school. I hope it helped him rejuvenate a bit, he didn't really get a chance to nap, which might be ok with him so he sleeps better at night!

Tonight I talked to a friend who is going out of town.  I told her to have a good weekend and she said the same back then kind of made a sad sound like she wondered if she should have said that all things considered.  I told her that we WILL have the best weekend we can have, no doubt!  She agreed.

Here's to hoping that the weekend brings more progress and less RAIN!  I mentioned early on in a blog about the fog and how the weather was reflecting what was going on in our lives. I still find that to be true.  When he moved to rehab it was only for a couple of days, it had gotten VERY cold and there was snow.  A fresh start, a transition, new ground.  The weather started getting worse then through the night and the morning when things took a turn for the worse there was a downpour. I had to drive 40 mph down the freeway to rehab because it was raining so hard that no one was going the speed limit. After that really terrible day of rain it's been kind of a constant liquid sunshine, there's flooding and some mayhem and everyone is just dealing with it the best they can. Normally they tell you not to swim in flood waters because it's can be dangerous.  You don't want to get pulled under by a current or exposed to potential toxins.  We're doing an awful lot of swimming lately.

Just keep swimming. 

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