What follows here is quite detailed partially because I need a solid record of events, & partly because it is illuminating for CF patients, who can appreciate the insight into the process and particulars of dying from a lung disease in a way most people can't. A warning: it's a long post. A LONG post.
Let's set the scene as of August 24th:
My dad has been on o2 for a couple of years because pulmonary fibrosis, an insidious, unexplained lung condition, has been destroying his lung tissue. His resting sats are rarely above 90, but I understand the body can get used to that. His active sats could go below 70, but once he started o2 full-time a few months ago that has been rare.
But on the 24th, his sats dropped to 70 and stayed there. Docs found a clot in a pulmonary vein and had to go in via catheter and roto-rooter it out. Apparently heparin therapy was either too risky or would be ineffective; I'm unclear on that point.
Though Dad was moved to a recovery ward, Dad didn't improve. In fact, he got worse. Back to ICU on the 28th. If he lies still and does NOTHING, he can maintain 90% sat on 14 liters per minute of o2. If he does anything, even goes to the bathroom, his sats drop to 50% and he has to be put on 21L until his sats rise again. (I got all this info second-hand through Mom. She's gotten pretty good as a caretaker, so I think I can trust the numbers reported.)
They put dad on a non-re-breather, mom said. When I heard that, I suggested, based only on what I have witnessed in CF and my friend Stephan with severe asthma, that they may have to put Dad on the vent for a while - even put him into a coma to do it. This would let dad's system rest and recover. Mom said that had been considered and rejected, partly by the docs, partly by Dad himself.
At this point, my questions revolved around the numbers. How low is too low for sats? At what point are we talking permanent damage to organs? Isn't 14L oxygen an awful lot, not to mention 21?? In short, was dad dying? Nobody would say.
I asked Mom if I should head down there (you know, to say good-bye). She didn't know. She and Dad didn't say no - but they put the question to all my siblings, too. We could come if we want. They don't want us to miss work. I'd feel like a fool if I didn't go and the worst happened. I did see him a couple months ago, but he was doing so much better then and I don't think I specifically said my good-byes.
I asked for advice on the CF list because there are a lot of people who have been through this with fathers, siblings, and children w/ CF going through this; and one woman whose own father had pulmonary fibrosis! They backed my decision to race down to Florida. I appreciated the support - it made me feel like my head was on straight. Mom tended to downplay the seriousness of the situation over the phone - or rather she wasn't prepared to accept how serious it was herself, and so couldn't express it. I flew down very early Sunday morning. I had booked a return flight for Monday because there are commitments here I can't avoid or move, but once I arrived at the hospital it was clear to me that I needed to stay longer. I rebooked my flight to Tuesday; knowing I'd move it again if I had to.
I got masked up and found Dad's room in ICU. He was in bad shape. Mom just didn't have the capability to express it concretely, I guess. The facts are, when I arrived, he was on both a nasal cannula with 21 liters of o2 AND a non-rebreather mask (not a sealed, forced-air system like the Bi-PAP, but definitely helping lower the amount of inhalatory effort needed.) His numbers were worrying: heart rate 122+ bpm, respiratory rate 30+ bpm. Sats were 90s if he was resting, but would drop precipitously to 50s and 60s if he coughed or exerted himself in ANY way, including talking, writing, etc. But mostly, he was laboring for every breath.
The docs had him on some Atavan to reduce anxiety. Unfortunately, it made him spacey, so he was sometimes lucid, sometimes not. I was there long enough while he was lucid to talk a little and he tried to communicate his major concerns to me. But the effort would quickly lower his sats and cause breathing and pulse rates to skyrocket. There were times when he was unable to communicate - just mumbling or seemingly talking to old pals, though at one point he did try to talk with me about a recent article we'd both read concerning Pat Tilman. It was just a little too random for Mom, but i understood: he's been reading the Esquire subscription I got him last Christmas.
Within an hour or two, I was convinced that dad didn't have much time left, certainly not the 6 days before Rachel was due to visit, or even the 4 days before Becca's flight. Nothing was easing his respiratory distress; the numbers were getting worse. I emailed all my siblings with a very brief and pointed email: "get your asses down here. He doesn't have much time left." But even I didn't appreciate how little. I thought several days at least.
Between 6 and 8, family can't be there during shift change. So Mom and I did some things at the house and had dinner and then came back. Dad was even worse. Breathing more labored, with some involuntary moaning and gasps. They had the o2 cranked as high as possible - and again sats were generally OK - but at this point, his body was working SO HARD to keep the sats up that he was basically working himself to death. The strain showed in his face. He signed some checks for the siblings and it took so much out of him just to do that; he even questioned the number of checks, as it was only three. "But I have four children...?" Mom and I reassured him we'll all be taken care of. As mom tried to calm dad down and get his breathing and pulse under control, she said again that "Cris is here, and Rachel, Becca, and Marc are coming."
And Dad, in one of his few clear communications, very forcefully asked "Tonight??"
And my heart broke. My brain broke. The way he asked that - that one plaintive cry - clarified the whole situation for me in a heartbeat. There was so much desperation and hope in that voice - and I knew he was hanging on to see his kids one last time. My god, it killed me. I cry now recalling it. And at that moment, I could not have hit the panic button harder or faster had it been a 6" disc installed on my chest. NO NO NONONONO.
Breathe, think, calm down. There was so little I could do. I knew my brother was already on his way, but wouldn't be able to make it before the ICU closed to visitors for the evening. But I called my two sisters immediately and made it crystal clear that they had to accelerate their plans. I believe my exact phrase was "drop everything and get flights right now or it will be too late." This is not easy for working adults w/ kids, but they promised to make it happen. Those are the hardest phone calls I've ever made.
Mom and I talked to the evening doc and plans were made to put him on morphine drip in the morning and, basically, ease his end. This was an extremely difficult thing to accept, though it is absolutely in compliance with his expressed wishes - no heroic measures, no intubation. (We talked about BIPAP, but ultimately, it was decided that would only prolong the inevitable and be exceedingly stressful for dad, instead of peaceful.) Now we were racing against time.
Mom and I left dad sedated, with the nurses doing their best to get him a good night's sleep. I felt guilty leaving. I wondered if I should turn back and say my goodbyes, because I wasn't sure he'd make it through the night.
Marc got to the house right on schedule and the next morning (Monday the 30th) we got to the hospital as soon as ICU would receive visitors. Dad wasn't any better. The nurses said he'd slept relatively well, but his breathing was even more labored. He was, however, conscious and lucid. Dad asked me how I was and I explained, conversationally, why I was wearing a mask (current lung infection, etc etc). He said, "I understand."
I picked up Becca at a nearby airport at 10 a.m., but I was worried that Rachel might not arrive in time. On the advice of the pulmonary critical care doc, we started the morphine drip about 10:30. The point was to get his distress under control, but higher amounts (by slow degrees) didn't have as much effect as we'd hoped. This was clearly a no-win situation. Dad was unconscious from about 11:30 on.
Mom left at 1:00 and retrieved Rachel (the airport is very nearby and by the grace of god and nature, ALL of our flights arrived early!) Rachel is very brave, but she just dissolved when she saw dad, as we all had. Though he was unconscious, I believe that somewhere inside, Dad knew Rachel had arrived - his heart rate and breathing rate slowed a bit, not drastically, and he seemed - well, more peaceful. Maybe I'm just reading something into raw numbers and a drugged man that wasn't there? I don't know. But his best friend from his Marines days (whom I talked to on the phone that evening) also believes dad knew it. Dad wanted his family there, and he got it.
A little time passed during which we all said our goodbyes. About 1:20 or so, the non-re-breather mask was removed and he was now breathing with only the cannula supplying oxygen. The end came fairly fast. As predicted by the staff, his breathing rate got slower and slower. We said our final I Love You's and ... that was about it. By 2:00, his breaths were 30 to 45 seconds apart. Two nurses checked for heart sounds. Though the monitors in the room were turned off, the nurses station had a readout of dad's vitals and I watched as his heart beats slowed to 20, then even lower. The only sound in ICU was that one heart monitor, sounding very loud because of all the patients vitals, this one was demanding attention. Then Dad no longer breathed and in a minute or two, his heart rate went to 0. And my dad was gone. Just like that.
He died at peace, in no pain, having done everything he wanted to do in life (his words) and quite literally surrounded by his wife and kids. I'm happy with that. I cannot imagine a better ending and will be lucky if my own is as storybook perfect. I have to say that the staff and facilities at Holmes Regional Medical Center are top-notch. I have a horror of hospitals, but this was, hands-down, the nicest one I've ever been in and the ICU was extremely clean, quiet, efficient, staffed with super nurses and docs and, generally, all I could ever have wished for Dad's final days.
Our family is task-oriented, generally, and it is helping us cope right now. I'm already back in NY, as I have commitments to keep, and the other kids are staying a few more days with Mom to tackle the long checklist of things to do, people to call, forms to fill out, etc. I have my own "homework" assigned, even. Plans had long since been made for disposition of his body and effects and those are now all set in motion.
I can't tell you how honored I was to be HIS child and his first-born. I could have been born to any piece of crap jerkwad walking this earth, but I happened to be born to him. He was a better man than most of his side of the family and certainly better than his upbringing should have resulted in. He wasn't perfect by any means, but he had a lot more credits than debits on the cosmic balance sheet.
Also, it was an interesting renewal of bond between us when he started having problems a few years ago. The diagnosis of pulmonary fibrosis struck us both as ironic and we had new respect for each other. I have been privileged to watch his progress and get a preview of many of the things I will go through. For instance, this has helped me clear my head about what should be in my advanced directives, and what shouldn't be.
Many people reached out by email with support and I really appreciated it. I felt like I had a lot of experienced adults with me in that room, in addition to my family, letting me know my few decisions were the right ones and that what I was seeing was not, in fact, unusual; just hard to bear.
Dad will be buried in the family plot and ultimately, I'll be near him and my great-great-grandfather. I've already learned that his corneas have been transplanted and given the gift of sight to another man. For some reason, this makes me feel a lot better.
Rest in pleace, dad.