Here’s why I dislike hospitals #07.
First, I’ve been lucky to have only spend time there after having my tonsils removed in 1989 when I was 25. It all went well for me, I was there 2 days.
7 weeks ago, my father was admitted to the one in his neighbourhood. He has suffered from Muscular Dystrophy for many years culminating in great loss of strenght in his legs gradually using a cane, then a walker, but more destructively, losing the ability to swallow food and liquids. He finally had found a Surgeon who felt very confident in performing an operation to fix the problem with his throat but needed care first. He needed to gain weight and strenght. That was the role of the hospital. The solution to help him out was easy, insert a tube through his nose and feed him the essentials through this tube in liquid form. To make the matter worse, my father also suffered from severe arthrithis and needed regular doses of Tylenol daily, the one little thing to help that pain in his swollen heels, knees and hands.
OK Hospital, let’s recap. My father needs to be fed through a tube inserted in his nose. He also needs daily doses of Tylenol. That’s it. You don’t have to tickle him, you don’t have to read him stories, you don’t have to comb his hair, iron his clothes, do his shopping, pay his bills, take care of his house, take care of his chidlren, his wife… No, simple, put a tube through his nose, feed him for weight and strenght, and give daily doses of Tylenol.
In Quebec, not all hospitals can perform what seems to me such simple tasks. Hopital du Haut-Richelieu, 5 minutes away from their house, couldn’t do that very well at all. But since that one surgeon only operated in 3 different hospitals, this one (believe it or not) seemed the better choice. It was also much closer for family and friends to visit, which is always so important for a patient stuck in a bed.
The biggest hurdle with his situtation is that we encountered care givers that didn’t seem to care. Were they overworked? Probably. Did they responde to complaints? Not often.
The problems started early on his 7 weeks stay. Although feeding him was somewhat an easy task and was successful, treating his arthritis wasn’t. Remember, all they have to do is give him Tylenol… So here’s little Nursy Nurse-Nurse-Nurse, in her bright and colourful uniform, crushing 2 tablets to powder form and inserting it through the tube, followed with water… bang, the tube is blocked and has to be removed to be cleaned. Removing the tube is easy, inserting isn’t. It takes a team to slide it in, an x-ray to make sure it is far enough in the stomach and cannot be performed on a whim at a busy hospital. The first time it happened, it took more approximately 24 hours from the time it was removed to the time it was reinserted. That’s approximately 24 hours without food, water, medicine and Tylenols. Of course, inserting a tube also makes you very nauseous and his difficult on an already weakened patient.
After the new tube was inserted, we were all hoping they had learned from their mistake, but a few days later, another Nursy Nurse-Nurse-Nurse in a different but as bright and colourful uniform, made the same mistake. Didn’t crush the tablets well enough and the tube was blocked once more and the process started all over again. My sister immediately asked if they couldn’t give him the Tylenol in liquid form instead, she had children, she knows it exists, but she was told they couldn’t.
The same tube blockage happened 4 more times in the first 5 weeks… everytime losing a day of nutrition and medicine. He wasn’t gaining that much weight, nor getting that much better. All this time we thought of changing hospitals, there are some closer to Montreal with better reputation, but he would then lose his surgeon and this operation was so important for him, it would assure that he’d be able to sit down with us and eat the same food, not having to puree it into a soup like the last time we had spent time together at Christmas. So we stuck it out there and then miracles, they listened to my father and put in a larger tube, less chances of clogging if tablets are not crushed properly or in a hurry or whatever their excuses were. They also realized later the tube needed to be filled with water every 4 hours to help with the clogging problems.
It works, he’s gaining weight (25 pounds), he’s feeling alert, he’s in great spirit. He’s walking more often. The surgeon is happy with the progress and decides on June 21 for his operation. After that, only 2 more weeks and he’d be able to finally come home.
The last few days have not been so clear… When I last talked to him on the phone, they had discovered blood in his stool, most likely caused by an ulcer, but the doctors said they would still have him ready for his June 21 operation date. They needed to do tests of course first to see the cause of the bleeding. They found a polyp, they removed it, it was benign, but they didn’t find the cause of the internal bleeding. My father thought that it was because they had inserted the last tube in too far in his stomach and that could be the cause of bleeding. They had in fact inserted the tube in too deeply (a patient knows) but never determined if it was the cause or not.
Then out of nowhere on Wednesday afternoon, I get a call on my cell phone at work. A cell phone I never carry, a cell phone that’s never on, but for some reason was with me that day and on… My brother-in-law was at the hospital with my sister and under the recommendation of the doctors was urging me to come home to my father. 2 hours later, DR and I were in a car stuck in traffic on the DVP on our way to St-Jean-sur-Richelieu. (Thanks to this traffic, we were able to listen to Proud FM at 103.9, fun little new station, but it dies as you reach out of the city limits, let’s hope the signal gets stronger).
We arrived at the hospital at 10:32 PM without knowing much of the situation, what’s happened that caused this call.
On Wednesday morning, my sister who lives in Vermont, 1:30 minutes drive away, had planned a visit a day prior to his operation but my father told her to call first as he was expecting to have a test to prep him for the surgery and wasn’t sure what time he’d be in the room but would know more that morning. She called and there was no answer, she called the Nursy Nurse-Nurse-Nurse desk and they tell him that he’s there but sleeping… they tried to wake him up but he’s very drowsy… She calls her husband and they both drive… In the meantime my mom, who also has been dealing with hospital troubles of her own for the last 2 years, was going for a check-up and then a visit to my dad. She gets in the room a few minutes after my sister had called the Nursy Nurse-Nurse-Nurse and there’s my dad flat on the bed, oxygen mask planted on his face, not conscious.
When my sister got there, they were about to transfer him to intensive care, were just awaiting a bed in that unit. My sister was the one that had to deal with the doctors and was given this choice: Put a large tube in his lungs and connect him to a respirator – or – death. She chose the tube, if there was a chance to help him, save him, she wasn’t going to hesitate. What we found out later that day, is that he fell in a case of narcosis due to an overdose of oxygen. The tube in his lung plus a blood transfusion would be exactly the right remedy.
When Ted and I walked into his room, it was just my sister and her husband with him. He looked worst than I had ever seen him but I immediately notice the weight gain, I felt somewhat confident… I was given the low-down of what had happened. He lost consciousness, was given oxygen, was poisining himself with carbon dioxide from not being strong enough to breath out. The tube in his lungs was clearing everything, removing all the secretions, but the longer they leave the respirator on, the harder it would be for him to breath on his own after that… Muscular Dystrophy is a bitch, if you give the muscle a “vacation” they won’t want to return to work. Although his breathing muscles were fairly strong, the ones that breath out were not anymore.
We talked to my dad, told him what he needed to do to get better. He couldn’t talk back but could give us signs that he understood. We came back to the hospital around 7am on June 21st. My father was alert, his eyes were back to normal, he had been breathing on his own for most of the night and the morning, they weren’t really using the respirator that much to assist him at all… they were going to remove the tube. We were with him when they did, when they cleaned him, when they did his breathing tests successfully. We held his hands and talked to him, and he talked back, his energy level up, he recognized every one that was there, he, as usual, joked with the Nursy Nurse-Nurse-Nurses… all back to normal. We were asked to leave him alone around 11:30 so he could rest, he had had a tough night and needed some sleep. His big dissapointment came from the fact that they would not be able to perform his throat operation, he was very aware that this was supposed to be the day for it. He had asked for Tylenol as his heels and knees were really hurting. They came in with a huge needle full of red liquid that they pumped through the tube in his nose. A-WHAT????? I asked if this was Tylenol, they confirmed. I told them how most of his problems came from the fact that they kept blocking his tube because liquid Tylenol couldn’t be administer and they needed to crush tablets all the time… We really felt like this team was much more in control now but were angrier for the last 7 weeks.
We all went to lunch and started talking about changing his hospital, we blamed them for all the troubles, and even if it meant searching for a new surgeon, he needed a better place to get better.
After lunch, around 1pm, we came back to visit him and he wasn’t as alert, he looked in pain, his eyes were all teary, he said he was somewhat ok, but didn’t look it… We were once again asked to leave him alone to rest, assured that this was normal. We all went back to our hotel rooms for some needed sleep. At 4:30 pm, the hospital called again to say that they needed the family right away.
Here are the choices we were given:
* Insert the respirator once again, but it meant that they would never be able to remove it, he’d remain in the coma state he was in and his heart would eventually give.
or
* Not insert the respirator and let his tired body finally take his rest.
This was so sudden… why were those the only choices… a week ago there was no sign of such a problem. But what had just happened was that his “breathing out” muscles had died… he was poisining himself quickly with carbon dioxide and that couldn’t be fixed at all.
My mom, my sister and I were left to make the decision. We couldn’t leave him connected to a machine, unconscious. My father was always an active vibrant man, very proud. We took a LOT of comfort in the fact that we had had the morning with him, he had talked to everyone in the immediate family. We had seen him one last time in some joyous state. All the important people in his life had had one last moment with him.
Myself, Syl and Ted were at his side at 4:05 am when his heartbeat started to suddenly deteriorate due to the lack of oxygen in his blood. Ted went to make the phone calls to get the family to the hospital right away and Syl and I were left at his side for his very last moments. We were telling him to be brave, that he wasn’t alone, that his family was with him. At 4:15 it was over, there was no heartbeat, there was no more breathing and just like that, it was over.
There was nothing beautiful about that moment, but I was so proud to be at his side and ease him on. We don’t know our strenght until we are faced with those situations. I cannot thank Syl enough for making the right decision the day before and give us one more day with him, one more chance to tell him we love him.
My father was a strong man, with strong convictions all his life. He did good things and I can only hope that I’ll live up to his expectations and make him proud.
