Welcome to the system

I have written that my fear about my son getting a g tube was that it would medicalize him (The weight crisis in my house). I didn’t want our world to be filled with IV poles, drip bags and plastic tubing. With his current, NG tube it also involves an omnipresent stethoscope and syringe to check that the tube is still in his stomach.

But that hasn’t been the biggest change.  It is the bureaucracy that comes along with becoming more medically involved. I had not been home two hours after the NG tube going in than I had my first call from the army of service providers in this new world.

Although we had had an introduction to this world with the personal support worker who had been feeding Deane dinner, that truly was just the beginning. Because Deane had never needed it and because much of it was means tested, this world was largely a mystery to me.

At the moment, I am starting week two at our family cottage. We have lugged up the feeding equipment, the suction machine and the turner (for transfers). The stander will come in a separate trip.

Before we left, the supervisor of the government agency in the city contacted her counterpart in this area. She called me and took all the relevant details – how much help I needed, how much and what type of care Deane needed, how many hours I qualified for, plus our “remote” (her description) location and address.

She set up a nurse to come see us the first week. That was pretty straightforward and only took two phone calls to make happen. The rest is where my mind begins to swim trying to keep the details straight.

I have asked that instead of someone to feed Deane, those hours be used to do his range of motion stretches and light physiotherapy exercises. In order to make this happen, the government supervisor contacts the non-profit service provider and arranges for a PSW (personal service worker) and her co-odinator to be trained by a physiotherapist from a different agency. I have had phones calls from the non-profit supervisor three times and from the physiotherapist twice. Because the physio and the PSW work for different organizations, to get them here at the same time can only be done by my direct contact at the government agency who I haven’t heard from because she’s been on holiday.

My list of contacts and phone numbers keeps growing. There is a supervisor and then a regular contact at each organization. There are the main numbers and various extensions plus after-hour or emergency numbers.

I’m sure somewhere there is logic to all these layers. For the time being, I am adding to my phone list and hoping it all manages to come together.