Tuesday, September 24, 2013

Bend like the willow

Sam fell last night. That's why there was no post.

John found Sam where my running shoes are
I put him to bed and went out for my evening walk with Ben while John stayed home. About half an hour after I finished reading (one of Giada's new children's stories) Sam needed to go pee. Well, if you've been paying attention you know Sam doesn't talk much, and when he does its never above a whisper. So 20 feet away in the master bedroom John couldn't hear Sam whispering, "I have to go pee," and Sam proceeded to try and get himself out of bed and to the bathroom. He made it as far as the edge of the bed and fell. John found him on the floor next to his bed, stunned and unable to get himself up. Abby called me, but I had forgotten to change my ringer from vibrate to ring so I didn't notice. Fortunately I was almost home anyway, and arrived home a few minutes after the accident. Sam seems to be fine. He says nothing hurts and there are no bruises.

This changes things. It changes how we supervise Sam after he goes to bed. Ears are not enough. For last night my solution was to stay with him in his room. That means I went to bed at about 7:40. That means tonight I have to go to bed at 7-when he does. Unless we can come up with something else: a safety rail? That'll certainly slow him down, but we still won't hear him so he'll wet the bed. A baby monitor? You know I think I dropped ours off at Goodwill just very recently. Why did I do that?

Most of Sam's meds and vitamins
So you see we keep changing and adapting our lifestyle with every new wrench cancer throws in the works. First it was a medication schedule and Sam learned to take pills. We learned to watch for signs of infection and low platelet counts. We learned how to explain to each new nurse how best to access Sam's port. We learned to apply numbing cream and press-n-seal to the port site prior to access. We learned to nag Sam about drinking water. We learned to stay away from people and situations where he could be exposed to viruses he couldn't fight off. I learned to write really good sub and emergency plans for Sam's scheduled treatment days and unscheduled visits to the ER. We learned to read the printout from the lab detailing Sam's blood counts. I've learned to count his respirations and heartbeat to gauge if his system is under too much stress.

And then there's equipment-we didn't know how to open or fold up a wheelchair, now we do. I installed rails on the toilet. My friend, Linda, gave us a gait belt-at least I think that's what she called it. It gives us a secure place to hold Sam when he walks, in case he falls.

These are not things I wanted to learn.

We've only been at this for one year. Sam's only had one surgery. This is probably peanuts compared to what some families go through.


  1. I commented on your facebook post... about the door bell alarm (an option if you can get something through insurance) Its under $20 at walmart or the like. I can relate to the gait belt, bars in bathrooms, raised toilet seats, transfer benches, bed rails, hospital beds, wheelchairs, walkers, canes, meds, etc

  2. hello dear family i do not know~
    here is an idea, although it is about 20 years old & i'm sure there is a more modern approach, maybe it will give you an idea... when i was in a wheelchair & bodycast as a teen, i could not get to the bathroom by myself. my folks got a portable phone (i think they are all portable now!!) they kept the base in their bedroom, i kept the phone. the phone had a speaker button to the base so i could call to them in the middle of the night if i needed to "go". don't know sweet sam's capabilities, but something like this or walk-talkies, kept turned on might work, short of a baby monitor.

    anyway, just a thought to get ideas going. best of luck.

    ~beckie, a neighbor in atascadero