Chapter Eight, Part 6: A Blue Christmas

On the afternoon of Christmas Day, a parade of specialists came to see Dad in the ICU.  Dad continued to be somewhat confused with bouts of head, stomach, chest, and/or throat pain and still with no appetite, although he ate some yogurt, a popsicle, and some ice cream with encouragement from us over the course of the day. 

All of the consulting doctors that day were new to our case, and we asked each of them to give us their opinion about what was causing Dad to be so sick and their thoughts about what should be done to help him.  When the neurologist came in, he asked Dad the standard orientation questions, and Dad seemed fairly clear except for the fact that he thought he was 41 years old.  The doctor gently pointed out his actual age to him and then said that confusion as well aslethargy and weakness can stem from a severe blood infection like Dad had been fighting and also from wildly fluctuating blood sugar levels, which had been also been going on with Dad.  Dad listened earnestly and then asked, “Do you think I’m going to die soon?”  

I felt my breath catch in my throat.  “No,” the doctor responded evenly.  “In fact, as far as I know, all of the doctors here think you are going to get better.”  

“I thought I remembered that someone told me this morning that I am dying,” Dad said.

The doctor looked him straight in the eye and said, “I think your memory isn’t all together accurate right now.  Just a minute ago when I asked you how old you are, you said 41, and that’s not right, is it?”

“No, I guess it’s not,” Dad said.  

“I think some of that confusion is what’s making you wonder about dying, too,” the neurologist told him gently.  I watched Dad’s face, and I saw him trying to accept that news, trying to believe what he was being told, trying to swallow that pill, trying to get past his fear.  I could tell by the look on his face that he was only partially convinced, and I so wanted him to see that he needed to trust us when we told him that he was going to get better.  

The doctor reinforced to Dad that nutrition was very important and that he needed to eat in order to get better.  Dad agreed and said that he would try harder to eat even though he was “zero hungry.”  

Also in the lineup that afternoon were a neurosurgeon, who told us that based on the MRI and CT scan on file he agreed that the tumor seemed “stable,” and a cardiologist, who noticed on the latest lab report that Dad’s ammonia level was abnormally elevated, which can cause confusion, loss of appetite, stomach pain, and weakness.  [Side note: I later learned that an elevated level of ammonia in the blood can be a sign of kidney/liver failure, and I wonder now if this was the first sign that Dad’s body was starting to shut down.]  The neurosurgeon said that he was concerned about the high dose steroids that Dad was taking, and he made a slight adjustment to the dosage in hopes that it would help improve Dad’s condition.  Because we were watching over Dad like hawks and because we were searching so frantically for an answer, we asked the cardiologist about something that we had seen come up on the monitor readings over the past 24 hours for the first time: PVC’s, or premature ventricular contractions, otherwise known as an irregular heartbeat.  A PVC can occur for many different reasons, ranging from the onset of a heart attack to things like a side-effect of certain medications or from stress and exhaustion.  This reading explained the chest pain that Dad had reported (and that hadn’t really been addressed by the medical team) since he had been admitted to the ICU, and we were concerned that it signified a problem with Dad’s heart.  The cardiologist said that he felt it was related to anxiety and possibly to nutrition/hydration issues but that he would investigate it further should the pattern continue.

Evidence of a PVC on the heart rate monitor

Back at my parents’ house, we had the minimum of tradition covered for Christmas.  We took shifts spending time with the kids, each of whom also took a turn sitting with their Gramps in the room in the ICU that day.  We ate in the hospital cafeteria during the limited “special holiday hours” it was open that day (hours that are not so special to family members of patients who are sick enough to be in the hospital on a holiday); we were so sad and so worried, but, as we had been, we were together in our effort to help and protect Dad.

Dad, of course, continued to be friendly and polite to everyone with whom he came into contact.  In between visits from the doctors, Dad chatted briefly with the nurses and aides.  Even when he was in pain, he doled out thank-you’s and was obviously trying to keep what he considered to be complaints to a minimum.  At one point, he saw a woman mopping the floor just outside the room next to his on the unit.  He strained to move his arm from underneath the covers and then waved at her.  She was busy working and didn’t see him, and so he waved several more times.  Finally, he turned to my sister and me and said, “Why isn’t Kathy waving back?”  My sister and I exchanged a look and then asked him for clarification.  His explanation clued us in to the fact that he thought it was my sister’s mother-in-law and that he couldn’t understand why she didn’t stop mopping long enough to wave back.  He seemed convinced, even though the cleaning lady looked nothing at all like Kathy.  We decided to let him have this one and told him that she was probably just really busy, which he accepted, thankfully since we knew he was exhausting himself with all of the waving.

Dad continued to ask for reassurance that he wasn’t dead; he seemed to be trying to “catch” each one of us alone to ask us again, just to make sure we were all SURE.  And even then, even after being told by each of us whom he trusted so much and by all of the medical staff whom he respected, I could see the doubt in his eyes and hear the uncertainty in his voice.  It wasn’t like he thought we were lying to him; it was as if he was convinced that we didn’t really have all of the information, that we weren’t clear on all of the facts, and that we just didn’t know what we were talking about.  We had several surreal conversations and exchanges with him about being alive vs. being dead; a few times Dad asked, “How will I know that I’m dead?”  Finally, I pointed out the pulse oximeter that was affixed to his index finger and told him that the little red light on the device was proof that he was alive.  I wasn’t sure he would buy it, but evidently he did because from then on he kept a close watch on the light on his finger.

But still, Dad wasn’t done with that conversation.  Death and dying were very much on his mind; it was like he couldn’t shake the thought or the feeling, much like his body couldn’t shake whatever was going wrong with it.  Late on Christmas night, my husband, my mom, and I were standing guard over Dad in his tiny, freezing cold room in the ICU.  The three of us had our masks and gloves on to protect Dad and our winter coats and hats on to keep us a little warmer. Dad’s hospital bed was in the middle of the little room, pointing towards the nurses’ station and facing the sliding glass doors.  Behind him was a window that overlooked the hospital grounds.  I looked out the window and saw snow coming down hard; it was a white Christmas indeed.  A wave of despair hit me; I was so sad that Dad couldn’t see the big, beautiful snowflakes that were falling just outside his window.  For a second, I considered trying to turn his bed around so that he could see it, but then I realized that he was so sick and so miserable that he just couldn’t even care about anything else.  Like us, Dad didn’t need Christmas presents or money or material things at all; he just needed his family and their love.  My eyes went from Dad’s face to the window and back, and then Dad said, “What’s it like to die?”

Somehow the room got even quieter than it had been a second before.  As we had all been doing since Dad had gotten sick, Mom started to respond to Dad by reassuring him that he wasn’t going to die, but, for some reason, I felt an urgency to address his question directly.  Trying to piece words together in the best way that I could, with a shaky voice I said, “I think you just stop breathing, and then you don’t hurt at all anymore.  You won’t be cold, and you won’t have anything to worry about; you’ll just be at peace.” I had a gut feeling that talking about more spiritual things would push past the boundaries of what he was willing to think about in the moment: I was hoping to target the things he seemed to be most afraid of; I was hoping to comfort him even though I really had no knowledge or basis with which to do so.  I wish I’d been more prepared; I wish I’d been more eloquent.  It’s one of those times in life that you can’t rewrite the scene, you can’t take back or add words, you can’t do it over. I just had to hope that it was enough to give Dad the peace he seemed to be so desperately seeking.