My time here at Bridge Point has been a very real look at the realities of what we can expect from our health care system these days.
I'm going to be truthful and sometimes, the truth hurts.
On the first day I was delivered to Bridge Point from Toronto Western I was brought by stretcher to a room on the third floor. Within half an hour a nurse arrived to our room and said he would be doing the intake forms. So for half an hour my daughter Jerri and husband Barry and I wondered if anyone even knew we were there.
The intake took approximately two hours. I had eaten at 7am and it was 11:30am when we arrived. I told them I was hungry and thirsty. They told me a tray would arrive at some point. I actually felt awful, I just need something. I continued to answer intake questions as I sat on the bed where I was dropped off.
I needed to use the washroom. I did not have a walker, or wheel chair. The nurse said I must wait for Physio to drop by to get a walker. What should I do in the meantime? He didn't know. I asked my husband to help me to the bathroom.
We continued with the forms until 1:30. Finally at 1:40 a tray of food arrived, by then I was losing my mind, I was so hungry.
I felt shaky and unwell but better after I ate.
We sat and waited in the room as we were told each of the team members would be around to meet us. They were, and eventually at 3.30pm, the Physiotherapist and Occupational therapist arrived. I was very happy to see them, and they were great. Both young dynamite women who I was eager to work with. They were surprised to see I was left without mobility for so long. There was, as it turns out, a wheelchair with my name on it. Nobody had given it to me.
The afternoon ended and I finally had a walker and wheelchair. A dinner meal arrived and we were shocked to see the toddler like portions and lack of vegetables.
The building itself had quite an impression. The view of the city is spectacular, as is the roof top terrace. But we were left wondering what exactly the plan was for me and who, if anyone, was in charge of making and presenting that plan.
I found out the next day that the plan evolves and there is no one person who oversees my case, or any case for that matter.
One by one I spoke to doctors and others healthcare professionals. Each had a role but each had a different perspective.
I was thinking back to my last rehab experience and how I had a primary nurse assigned to me and if there was anything I needed and couldn't get elsewhere she was my go to person. There's no "go to" person here. They each look after their own area of expertise and move on.
I felt as though they had all the right pieces but that they were floating about not connected to anything.
It took several days before somebody told me they meet on Wednesdays and case conference about each patient. Having moved into the program on a Wednesday it would be a full week before their was discussion about me and my program. During that first week I also experienced a lot of medical problems. My incision continued to leak. Every different shift a different nurse looked at it and had an opinion about what should be done. The next morning the doctor would come in take the bandage off and look at it and say, there's a small leak but the incision looks good. I would then wait for a nurse to have time to put the bandage back on. All the while my sensitivity to tape would cause the skin to come off every time the bandage was open again. The skin around the scar was raw. It had blistered and broke; it was red and raised and caused me a great deal of discomfort. Finally I stopped allowing people to have a look. There was one nurse and the doctor and that was it. Only then did it start to heal.
The day came to take the staples out, all 22 of them. There was much discussion and a call to the neurosurgeon's office finally to decide to take all but ten out. I told the doctor there weren't many nurses on this floor I would allow to take the staples out. There was one nurse, Maria who had shown compassion and care when she saw the state of my back. I asked for her. They agreed. She stayed after her shift and took her time to take them out. She took them all out, put steri-strips on the bottom few and it was done. She would come back the next day to take out the one stitch that closed the drainage area.
It felt better to have that behind me. The pulling feeling of the staples was gone. There was some swelling but otherwise it felt good.
One of the benefits of being in a spinal hospital like Lyndhurst was I never had to explain the weird and wonderful things my body did. Here at Bridge Point their main rehab patients are stroke patients. They do have spinal but not as many.
I have a condition called Autonomic Disreflexia. It is exclusive to those of us who have spinal injuries in the thorasic spine. It causes blood pressure to soar unexpectedly and heart rate to plummet or soar. This happens when there is pain or discomfort below this thorasic spinal injury site. The most recent surgery site is indeed below the thorasic injury site. I was having AD, and I was having it often. It is considered a medical emergency if not looked after. I have been given an emergency blood pressure drug to take when my blood pressure reaches thirty points above my normal. I have been managing it for years.
It was first discovered that I had AD while I was still at Lyndhurst in 2002. I had gone for a bladder scan and it caused it to flare. They educated me and told me once you have it you will always be vulnerable to it. They gave me a medic alert for it and told me to take it seriously.
One of the main reasons I spent five nights in ICU at Toronto Western was because of AD. We just couldn't keep it under control. Finally the night before I was released it settled for 12 hours. They felt safe enough to put me on the step down unit and then transfer me to Bridge Point.
The first day at Bridge Point I had AD again. I asked for the blood pressure medication and was met with a stare. "Your blood pressure is not that high" we heard time and time again. Apparently only the doctors at this facility understood AD and how to treat it. It was ordered on my chart but I had to fight to be given the medication. The doctors were informed of the struggle and agreed to educate the nurses with a “Lunch and Learn” down the road (which are voluntary).
One afternoon during a meeting with the social worker, my blood pressure was taken and was a full fifty points more than considered safe for me. I asked for the medication and was met with a flippant response by the nurse. I asked the social worker to take notes and pass them on in my case conference. She was shocked. I had to point blank say "this is a medical emergency, get me the blood pressure medication now please, if I don't get it I could have a stoke right here and now." She left and came back with the medication but said, ‘I don’t understand this.’
I had that same scenario several times over the first week. We soon discovered I had a urinary tract infection which causes AD in most spinal patients. Given the antibiotic, the AD and infection both settled down.
At the end of week one, I felt exhausted just trying to keep-up, let alone move ahead. I can't imagine how my family felt.
The buzzer system for nursing only works when there is someone at the end of that buzzer. The buzzer here can be heard ringing 24/7. In fact there is a station right outside my door that rings incessantly all through the day and night. Many times I look out and there is a nurse or two sitting beside the button just letting it ring. It happens a lot here. There are not enough nurses for the number of patients therefore people have to wait, and wait long periods of times.
In the morning I have my blood pressure taken, given my medication and then left. I first was dependent on somebody to get my clothing for me and to set me up in the bathroom with towels etc.
Each day I have physio at 9.30am. One day I was still in bed at 9.15am when Jerri arrived. Nobody had checked in to help me out and I had rung 30 minutes before to no response. She and I quickly got me ready and away I went. From that day on either Barry, Jerri or Meg was here to get me ready for the day. Family is what is going to make this successful. I honestly don't know how the other patients who don't have family here cope.
It would be interesting to walk in the nurses’ shoes for a day, and I think it would be beneficial for them to walk in the patients’ shoes too. Then we could determine how many of the gaps are caused by “the system”, and how many come down to the individual staff members just not caring.
What I know for sure is when life changes from a spinal cord injury or a stroke you and your family are devastated and holding it together the best you can. Friends and relatives offer what they can and it all helps to refresh and replenish us to move forward. It takes everything everyone has to keep positive and not let the ball drop. It helps to know that it is up to family to make it work right up front. Once you know that you dig in and get it done. One step at a time.