Considering Sam

special needs, courage and big big love

Month: March, 2013


Wednesday morning hospice came out to get everything started up for us. It was their first visit. By that afternoon we had a Hoyer lift, a feeding pump and IV pole. By Friday we had the rest of the supplies we needed and a visit from two CNAs to bathe Sam. All of Sam’s meds have been ordered. One in particular, Prevacid for reflux, we’ve been having a difficult time with since it’s a dissolvable tablet and frequently gets stuck in his g-tube. I mentioned this to the nurse and by the following afternoon she had tracked down a compounding pharmacy near us that could change the medication into a liquid form. And it was ready an hour later.

From my experience with healthcare agencies, medical supply companies and pharmacies the speed with which this has all come together is a freaking Christmas miracle. Anything we’ve asked for they’ve provided. There was one piece of equipment, a Tumble Forms feeder seat, they were having a hard time tracking down but instead of giving up they called Sam’s old school and asked to borrow one. Done. Wish granted. I’m pretty sure if we asked them for a pony we’d quickly regret it.

Now if only I’d had this kind of competent service when Sam was born then Jackson wouldn’t have learned all those cuss words.

Sam’s Day

This is how our day went today according to Sam:


We’ll be starting up hospice tomorrow so hopefully things will be a bit more exciting. Again, thanks to all of you who helped out with that!

Rough Waters

There’s a parable (which I’m totally going to mangle because Google has failed me) about a seasoned fisherman, thirty years on the job let’s say, who everyday goes out on his boat bringing along motion sickness medication. One day someone asks how come he continues to work on the ocean if he’s prone to seasickness. “Oh no,” he replies, “I’ve never been sick on the boat a day in my life.” To which the other asks, “Then why do you always travel with the medicine?” And the sailor’s response? “Every sailor has his sea. I want to be prepared when I meet mine.”

The other day my job was to start up services with a hospice provider in our area. Sam’s nephrologist called with his newest lab results. She asked if I had contacted hospice yet. I wanted to laugh and say, “No. Of course not. Would you begin the process for the end? Or would you rather scrub the burnt egg pan? Or do two weeks worth of laundry? Or lose yourself in the carefully constructed happiness of your Facebook friends? Or anything other than start up an end-of-life service for your son?!” But I like Sam’s doctor. She’s very compassionate. So I held it all inside and told her I would contact hospice this week because she thinks it’s time. David and I know it is.

One of the symptoms of kidney failure is increased sleepiness. We talked about pulling Sam out of school once he could no longer enjoy all the experiences they offer him there. We’ve noticed that Sam has been sleeping more at home. He’s also been sleeping more at school. This, combined with test results indicating nearly intolerable levels of waste products in his bloodstream, has impelled us to want Sam home full time. Unfortunately he requires more than one person to take care of him. If his size and squirmy unwieldiness were not challenging enough to handle alone, then his precise feeding schedule, positioning needs and the variety of medicines he requires – one of which is an injection – can consume a person’s entire day. Thank goodness for home hospice.

Or so I thought.

I called a provider with pediatric services to ask if they came out to our town; they told me we’d have to bring our child to them for grief counseling. I explained that, no, I was not calling for a child experiencing the death of a loved one – not yet at least – but that I was calling for my son who was in kidney failure. Oh in that case, they informed me, our town was outside their geographical range. They gave me the number of a closer provider. I made the second hospice call and was put on hold for a few minutes. The director finally came on and apologized for keeping me, explaining she had a volunteer who was lost and needed to get to a client but couldn’t and it took time to look up the proper address and directions. “Pardon me,” I imagined myself interrupting, “but I don’t quite give a fuck.” I can appreciate that they were having problems. On any other day I would insist that the weight of each struggle is relative. But at that moment? At that moment my dying son trumped their lost volunteer.

Unfortunately, they too, were unable to travel to us. But they recommended another provider, which happened to be the first one I called. So I hung up. Then I cried. And I gave up. Because the thought of exhausting the list of agencies was too much. The possibility that we would be unable to have Sam spend his last days at home, unbearable. There’s no hope that Sam will get better; but there’s still hope that our family can spend his last days together peacefully. Losing that hope with more futile phone calls? Insufferable.

And it was this realization, as I sat there in front of my laptop with phone in hand, that it wasn’t the hot tears blurring my vision that prevented me from performing an internet search for yet another hospice agency; it was the hopelessness of the entire situation. Sam wasn’t going to get better. We weren’t going to be able to fight for something – a new doctor, medication, adaptive equipment – that would improve his quality of life. It’s no longer about holding on and riding out the storm of insurance rejections, bad advice and red tape; it’s about letting go.

I’ve never been good at letting things go. Challenges motivate me to act. And in the past there’s always been a certain high I feel when taking on a difficult situation and seeing it through to the end. But of all the difficult projects I’ve embarked upon for Sam, this is the first one that has me clobbered – gripping the rail and heaving. It’s time for help. So if you know of an agency that provides pediatric home hospice to Hillsborough I’d love to hear from you. And if such a place doesn’t exist, we’ll be looking to round up our own volunteers to come help us out. I’m heading out prepared this time.