We arrived late Monday night and were able to squeeze in several hours with Dad before we checked in to the hotel. He wasn't responsive but we were told he'd been this way since Friday. His other vital signs were stable, so we didn't expect anything otherwise. Allie and I were able to meet with Dr. A's fellow who gave us an update on Dad:
His tube feeds were being pushed at 1200cc a day, from which only 400cc were ever absorbed--a pretty low volume. But when we arrived Dad had been prescribed pressors, which raise blood pressure when it drops to unsafe levels. As the drugs work the nurses turn off j-tube feeds to prevent damage to his GI tract. So no calories. The fellow allowed us to review his recent chest x-rays. He pointed out the rapid saturation of his lungs (caused by his pneumonia) over weeks' time--we also reviewed his latest CT scan.
All numbers and scans aside we knew Dad was tired (so we were) so we left the hospital to stay up and put together a list of questions we wanted to ask the doctors the next morning.
This morning we arrived at the hospital to find Dad in a similar condition when we left him last night--despondent but stable. It wasn't long until we were called into a private room and having discussions with 4 of Dad's doctors: his chief surgeon (Dr. A), the pulmonary specialist, his nephrologist and the infectious diseases doctor. Each had a chance to give us a comprehensive update on Dad's status and prognosis. We were given all the time we needed to make sure our questions were answered. And they were. All of them.
Dr. A began by reviewing Scott's struggle over the past 2 two weeks of decline, speaking specifically about his multi-system failure (including liver failure, the recent kidney failure, respiratory infection and the increasing fluid in his circulatory system). We thought, "get rid of the fluid again" but Dr. A discussed how diuretics were no longer an option since lessening the fluid would make it more difficult for his heart's blood pressure to remain stable. Also, Dad needed his kidney to expel the liquid waste and that's IF his kidney was functional (which is currently in acute kidney failure). We thought: "give him calories to stimulate his liver functionality" to which Dr. A responded that he needed the pressors more, making it difficult for Dad to receive much-needed calories through the tube feed. "Why is he so out of it, but not medically sedated?" Dr. A response: "his liver's disfunction releases ammonia into his blood; this toxin debilitates the mind and places Dad in his non-responsive state." To our disappointment there is no way to diffuse this ammonia or other toxic enzymes from Dad's blood. Because of his fuzziness Dad has been very mildly sedated otherwise (if at all) over the past week.
The nephrologist (a doctor that focuses on kidney function) mentioned that Dad's recent kidney failure was not good. And that the only response to the failing kidney would call for immediate dialysis. As some/most of you know, prior to Dad's kidney transplant 12 years ago he dialyzed for about 2 years. This was a difficult time for Scott and one he was adamant to never relive. To hear the doctor mention dialysis could be temporary but might be chronic (if he recovered) was important for us to hear. Other non-psychological risks with dialysis included dialysis line infections, further insults to other systems or even sepsis.
Next was the pulmonary specialist; he said that after the second surgery to remove the hematoma, Scott's lungs were filled with water. The ventilator's intended use was to dehydrate his lungs; instead the water promoted bacterial growth which spread very quickly (evidenced on the x-rays we reviewed last night). The one bacteria gave way to another which deteriorated his lungs' health even more, allowing blood, puss and other body proteins to block and prevent the oxygen/blood gas exchange. Dad was entirely reliant on the ventilator at this point due to the foreign bodies in his respiratory system and had elevated breathing levels to try and compensate for his lack of breath. It was this doctor's opinion (shared by the other doctors) that his lungs were should be considered the most imminent and persistent problem.
The infectious disease doctor mentioned that he had prescribed every antibiotic imaginable, even those closely related to ones on Dad's allergy list, but they were known to treat the bacteria growing in his lungs. Unfortunately, it seemed that the consistently high volume of antibiotics in Dad's system (for ~6 weeks) had a number of unfortunate consequences: first, long-term antibiotic use promotes the growth of drug-resistant bacteria--this bacteria does not tend to be affected by proven medicine; and second, each antibiotic carries with in nephrotoxins that damage/insult the kidney. It was interesting to note that the day after they administered a drug listed on Dad's allergy list (cipro) his kidney dried up. Regardless of what lead to the damage, having his kidney functioning again would not heal his liver, nor would it cure the infection in his lungs. The doctor mentioned "there is not another pill we can give him"--the drugs were not working either.
They tried to put things in perspective using phrases such as "he's a 60 year old [61 actually] with a 90 year old's body", "any treatment applied now would not be treating him, it'd be treating his numbers or you [his family/friends]", or describing him as "resilient", "strong", "a fighter", "courageous" and "compassionate". None of which seemed to help the situation, but at the end of the discussion we were faced with a decision. All we wanted was to talk with our Dad and hear his opinion on the whole mess.
They said it was unlikely but we had our chance to talk to our Dad. Right after this meeting Allie and I spent some one-on-two time with our father. Since it was still early in the day (around 10 EST), we caught him with enough energy to "communicate" or maybe just "listen". His eyes were surprisingly open and searching when he heard our voices--must've been a first in a while. Sometimes he'd blink, widen his eyes, grunt or gurgle--not to any request or statement in particular but enough for us to feel as though he understood what we were saying about his kidneys, his worsening condition and everything else on our minds and hearts. We let him know we love him and that his brother and others were on their way to his room to spend time with him.
The family spent the next several hours in his room chatting with him and dusting off old memories; we caught up and laughed over forgotten stories. There was a hum in the room that you'd find at family reunions and Dad was a part of it. We played his favorite songs for him and even turned on the FoodNetwork (he could never get enough of this channel!). We were each able to have a nice quiet or talkative candid moment with Dad. The rhythm of the next 6 hours felt easy, normal and cheery.
Our father, Scott, exhaled one last final sigh of relief around 7:17pm EST. He was in no pain and he left quickly. His brother Craig, Craig's wife Cathy, and our mother Judy were sitting along-side his bed, while Allie and I held each of his hands, leaning close. We spoke to him and rubbed his head, neck and cheeks. He most certainly felt our love fill him and pour over him during his last moments.
