“Have you considered getting a hospital bed for after the operation?” asked the occupational therapist.
“You should have a suction machine. I’ll go get the papers to order it,” said the respiralogist 20 minutes later.
We were at an annual follow-up visit for Deane, led by a pediatrician specializing in neuromusclular disorders. They use a team approach which brings many specialists together at one time. The objective is to co-ordinate his care while at the same time, minimizing the number of separate clinic visits we have to make.
The social worker popped in to chat: “Here’s some information on young caregivers – those who care for siblings and parents who may be sick. It would be good for your daughter.”
Then the nurse returned after sharing her initial findings with the rest of the team. “We want you to do a food chart on what he eats or drinks for three days,” she said.
“It’s been a number of years since he had a swallowing study,” said the student doctor during his turn. “He should have another.” He also said he should be seen by the salvia clinic to address his drooling.
After three hours, armed with everyone else’s information, the doctor came in, made a suggestion about a rash, acknowledged that it had been a long day and sent us on our way.
I had picked Deane up at school at 1 p.m. It was nearly dinner by the time I had collected my daughter from a friend’s and got home. We were supposed to go swimming, but I couldn’t fathom doing anything other than going to bed early.
The next day, I got a call booking a visit to a nutritionist, order by the nurses, as soon as possible. Could it not wait until Deane is in this hospital doing three months of rehab after his impending operation? Apparently not.
Given the costs of health care, I approve of the team approach. Having all the different disciplines discuss the patient’s case together is an idea that should be embraced more in our system. It also is a lifesaver for families that come from far way to use these services.
But while the doctors, nurses and therapists each bring their professional focus on the patient and can provide a more thorough analysis of the physical issues, the cumulative effect on patients and their families is overlooked or, at best, underestimated.
Within three hours in an overheated room, I was asked to process buying a hospital bed and/or a suction machine, a sibling course for my daughter, a food study, swallowing test and visit to the saliva clinic – my head was swimming. Scheduling the extra appointments, getting quotes and funding for new equipment and spending days measuring everything Deane consumes is a daunting task to hand anyone.
Having all those professionals combine their expertise, no doubt benefits my son’s health. Unfortunately, I’m not sure those professionals understand what the intense immersion of that afternoon and the weeks it will take to fulfill their recommendations, will do to the frantic schedule and guilty exhaustion that is my life.
I so get that. I remember getting a written report that listed about 20 recommendations and feeling completely defeated, knowing I could never do it all. When is Deane having his operation? I can’t remember if I told you about our story with Ben two years ago, but I would recommend Deane doing his recovery/rehab in hospital — we made the mistake of purchasing a hospital bed and were led to believe we could manage it at home — and it was terrible and Ben had to be readmitted to Bloorview.