I don't think I have ever really gotten into the details of that week in April, 2015. There a lots of details but I will give a brief summary so I can keep this short. I will never forget that horrible day.
John was at work one day when all the sudden something happened. I know from an analysis after-the-fact that he must have experienced fear to go along with the sudden pain in his head. And he had temporarily lost his eyesight for a short while. He certainly knew something was very wrong. After being rushed to the hospital, he was admitted into the Neurology ICU at Fairfax hospital where he started getting round the clock care.
At first, the doctors speculated that he had meningitis. But with John's history of Spina Bifida and Hydrocephalus, it seemed likely that he was having a problem with his shunt. He had experienced shunt failures in the past when he was a young boy. These failures led to near death situations. Thankfully his specialists back then knew exactly what to do. The fix was shunt revision surgery.
It seemed like John might be headed for another one of those corrective surgeries. But for some reason, that course of action was not pursued. Instead, John suffered immense pain in his head and was weak and not hungry. The staff at the hospital treated his pain with pain medicine. In fact, they over medicated him. No one thought to consult with John's neurologist who was familiar with his history. Despite my mother asking them to do so. Their answer to my mom was that John's doctor would not come to Fairfax Hospital. In hindsight, we should have documented this as one of the many failings of the hospital.
After more than a week in the hospital, most of the time in horrible pain, the doctors finally decided to perform shunt revision surgery. This surgery involves opening up the skull as well as the abdomen to insert a new shunt which is a long plastic tube that drains excess spinal fluid from the brain. Shunts are very common in people born with Spina Bifida and Hydrocephalus. Here is a photo of John's head after the surgery.
Remarkably, despite the doctors bumbling about all week trying to decide what to do, the surgery was seemingly a success. For the first time in a long time, John's headache was gone. And I can tell you that he was pretty darn relieved. His anxiety had gone way down and he was starting to picture himself going home.
However, that night, things took a huge turn for the worse. I spent the night with John in his hospital room. Unfortunately, I did not realize what was happening before me. John's condition was getting worse and worse. His headache was gone but something else was happening. His heart rate was elevated. It was higher than my heart rate gets when I run several miles and he was not moving and had not been out of the bed in days. And he had shortness of breath. And John's belly was swollen. I alerted the nursing staff but they said that the monitoring machine would alert them if there was a problem. So much for care. You would think a health care professional would be worried about elevated heart rate for hours and hours, shortness of breath, and distended belly. But the machines....
So John spent that night in horrible pain, uncomfortable and scared. He would call out my name and say, "Water." I would drip a few drops of water into his mouth and tell him that I loved him. Hearing those words seemed to comfort him. He said, "I love you too." That is all I could do. His condition got worse and worse. I complained to the nurses but they seemed nonplussed.
In the morning, a nurse came in and said that he needed to be prepped for surgery. They were going to do exploratory surgery to see what it was that they had screwed up when they did the surgery earlier. I heard a doctor say that perhaps they had "nicked a bowel." As part of the surgery prep, the nurse told John that she had to insert a tube down his nose to drain the fluid that was accumulating in his stomach. When the nurse was about to put in the tube, she said, "This is going to be uncomfortable." John belted out, "Just do it!" He was tired of the hospital, tired of the nurses, fed up with being in so much pain.
As soon as the nurse inserted the tube, it started to drain a dark red and brown fluid into a collection chamber. The chamber was filling up rapidly and the nurse called for help. They needed more chambers quickly. Just then, John violently vomited more red and brown fluid. His eyes rolled back and he crashed. The nurse had to call for the emergency crash team. A team of doctors rolled in with special equipment. One young doctor was asking the nurse questions she did not have the answers for. But I had been with him all night. I told him how many bags of IV fluid he had consumed which is the main thing he seemed to want to know. I am not sure what they did but they stabilize him. But John was weary, uncomfortable and in pain. It was around this time that John started moaning, "I want to go home." It still haunts me to this day. "I want to go home. I want to go home!" It was plea for all the madness to end. The poking and prodding, the procedures, and of course, the pain.
After that, the rest of the family had arrived. They took John down to for emergency surgery. I remember my Mom telling him that the doctors were going to make him all better. Honestly, John's eyes seemed to show his disbelief. He knew things were bad. He did not seem to believe us. The anesthesiologist had quite the concerned look on her face as she had my Mom sign consent papers that mentioned that any surgery has risk involved, etc. I guess the hospital has to cover itself. They don't want to get sued I suppose.
They took John away on the gurney and we all filed out to the waiting room. We were all now in a familiar place. John had so many major surgeries in the past and he always came through and recovered like the trooper he was. As we were waiting, I decided I could go get everyone lunch. So I took off with everyone's order and drove to a sandwich shop in Vienna. On my way back from the sandwich shop, I texted my brother Erik to ask about drinks for the sandwiches or perhaps another question. He told me to just come back to the hospital. When I arrived, I could not find my family in the waiting room and then I saw one of the pastors from the church. He looked me in the eye and told me the bad news. John had passed away.
I was shocked and so angry. They took me back into a room with the rest of my family. They were all there and had a head start on the realization that John was no longer with us. I cried and cried. I was so upset. Soon after, some hospital staff arranged to have us go back and see John. A woman explained that his hand might be warm but that he was indeed gone. We went back and there he was. He was covered in a sheet with a tube sticking out of his mouth and his hand on his chest. I grabbed his hand and it was ice cold. I wept uncontrollably and said, "It''s not right! It's just not right." John was my pal. He always had been. And I was devastated by his passing. We all were.
And then enters the doctor. He was here to tell us what happened. He went through some lame explanation about how it all went down on the operating table. Ultimately it was a pulmonary embolism that killed John. But this is where the doctor made a big mistake. He said, "Well, he did not feel any pain when he died." That made me so angry. But I squashed the anger. It was an amazing feet of control really. How could he say that. John spent his last week on this earth in terrible pain. He last words were, "I want to go home!" He spent the entire night with an elevated heart rate and shortness of breath. He was dying right before me and it was at no time pleasant. How dare this doctor say that. My brother Erik saw my clenched fist and later told me he thought I was going to lose it. I didn't but sometimes I wish I did. For John. My pal. My buddy. My first friend. My inspiration. By brother. I love you John. I miss you and will never forget you.
1 comment:
Jim, what John went through was absolutely tragic. Your family has suffered and this is just not right. I would like to share your story with the faculty at GWU School of Nursing. I hope that reading your story about John's poor care, our faculty can hopefully prevent this type of insensitivity and poor nursing judgement in the future. Please let me know.
Karen
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