Good news: His blood pressure was a little higher, stayed higher longer, and never dipped too low, so they actually had to stop the dialysis. This was accomplished on only a little bit of medication. His white cell blood count came down from 35 yesterday to 28 this morning.
Bad news: The BUN, blood urea, and nitrogen count are high. Therefore, Mike is going to receive dialysis 6 days a week instead of just 3. O.W.! But hopefully, it helps.
He has a rash along the sides of the body, which the nurse just discovered today. It may be a reaction to some medication, or it may be stress-related. Good God, is there any other form of torture available that has still been left off the table, and we can look forward to.
He didn’t respond to commands like, squeeze my hand, thumbs up, wiggle your toes and open your eyes after being off the sedative for an hour.
Boy, I had a lousy night’s sleep last night. I felt like I just dozed the night away instead of sleeping deeply. I was worried about Mike. I am usually able to set aside my thoughts about him, but not then. I’m worried that he has given up. He feels more distant to me. Of course, there can be a possible interpretation. I believe Mike is more emotionally dependent on me than I am on him. This means, if he dies, I think I will build a new life, but if I died before him, I think he would fade pretty quickly. This may be a pattern among men in general. Me and my big mouth. Hopefully, I won’t have to find out. There is no question that I will miss him beyond words. We have been so good to and for each other. Most days have been a pleasure. Now, this does not mean we haven’t had fights, nor does it mean that there have been bad days, even bad years when we were distant from each other.
The question now is why do I feel he is at a greater distance than usual. I can think of two reasons: the first is he is working on dying; the second is that he is finding his spiritual center and connecting more to God and needing me less but can still go on with life.
I think he experienced a change like that when he lived in D.C. while he got his Ph.D. and I stayed in Princeton. He left on Sundays and came home again on Thursdays during the semester. He learned that he could be fine without me. That was good, but we had to renegotiate our marriage. Finally, it worked out. If we go through a phase like that again, I will slam us into therapy pretty quickly. I don’t need him to be dependent on me, but I do need him to enjoy loving me and enjoy being loved by me. I also need laughter, silliness, comfortable silence, and great hugs and kisses.
Mike had 2hours of dialysis left when I came in. He does 4 to 4 ½ hours each session. The BUN ratio (blood, urea, nitrogen) is bad. This basically means his blood is very dirty. Usually, we can count on our kidneys to filter all that stuff out and send it down the correct shoot into the toilet. But, Mike’s kidneys are no longer in operating condition.
The dialysis nurse today was Daphne. Lovely woman. She was one of the people who helped me crawl into bed with Mike when he was having a dialysis session when he was on the second floor. While some of the dialysis nurses are cold and indifferent to the needs of the patient and family, Daphne is the exact opposite. She also had pancreatitis. She was much younger and had a much milder case; she was only in the hospital for 10 days. However, she was pregnant at the time through IVF and lost the baby. She said there is some connections between IVF and pancreatitis. The pancreas seems to be a testy organ.
After the dialysis was over, the nurse dropped the Propofol dosage hoping Mike would wake up, and they could try another round of spontaneous breathing. They were trying to get him off the breathing tube. No significant response. He could bang his hand, but that was it. He couldn’t give a thumbs up and couldn’t nod his head yes, or shake his head no. His pulse went way up, indicating he was anxious, and the nurse put him back on the Propofol. Not a happy moment.
One of the ICU doctors came in. This guy missed the course on Bedside Manner 201. He starts out stating abruptly, “ I’m sorry. Your husband isn’t improving.” I looked up, startled. “What does that mean?” “Well, I was hoping he’d be off the ventilator by now.” I still look a little confused. The good doctor, who may, in fact, be an excellent doctor, has no idea how to talk to people. I suspect from his affect, he may be on the autism spectrum. The poor guy actually said to me at one point, “I was trying to show understanding.” Ow! I ran into this guy before. I thought he was a control freak. Now, I see he has other problems. I will remember to cut him more slack and try to remember not to freak out when he presents his information in this cold, abrupt way. I actually said to the nurse that I would cut him more slack next time because of what I suspect his problem was. She smiled but said nothing else about him. What she did say is that the ICU has been going crazy for the last week. They have no more room, and the people who are coming up here are really, really sick. They are all intubated and on high doses of sedatives. She said she has never seen it so crazy. Apparently, sometimes people come up here who are recovering from a stroke and need to be observed more carefully but are otherwise in good shape.
At some point in the afternoon, I stepped outside Mike’s area to speak to his nurse. “You’ve been working here for a while. Do you have a sense when people have given up?” She nodded in a way that made me know she was answering my question about Mike, not just a general question. Between almost my walking out without saying my usual good-bye on Sunday or Monday night, my disturbed sleep on Tuesday night as I felt him slipping away from me energetically, and his inability to surface from the anesthesia so he could breathe on his own, I had the strong feeling that he had given up.
I went back to the room and spoke to him directly. I told him I wanted what was best for him. If that was death, I was on board. I reminded him of what I said when he went off at the age of 54 to start his second Ph.D. in Washington D.C. when we lived in Princeton. I told him if he did his work for God, himself, me, and our marriage, in that order, we would be fine. At first, he thought that was a totally bogus idea. Fortunately, I said it in front of a friend who he was prepared to listen to. She said, “Yes, she’s right!” Mike and I both did fine for the 7 years he was away during the week studying, and our marriage survived that separation. And, even more importantly, it created opportunities for Mike that made his life so much better, and as a result mine. We both thrive on each other’s happiness. Fortunately, envy is not big in our psychological lives. If someone else is doing something that I think sounds good, it means that I can do it too if I really want to. Of course, I have to put in the effort and stick-to-itiveness.
When I was through telling him he could go and I would be all right, he managed to tap his arm twice, forcing himself to surface through the maze of sedatives. I took that to signal, “Thank you.” As I see it, the more I assure him I will be all right, the more he let’s go. I think the start of his release came when he overheard Damon and his wife, Cylin, talking among themselves about what an amazing job I was doing taking care of myself. Once he had some assurance, I would be all right, he could relax.
I also told Mike that I wanted to be by his side when he died. I feel it is a significant moment in our marriage, something we should share. In this case, very much like our marriage, it will be a mutual decision. This will have to be a joint decision too because we will have to decide to take him off life-support and let him go. I reminded him I cried at our wedding, too.
I left at 6 today, a little earlier than I usually do. I stopped off at Long’s Drugs to pick up a hot/cold pack. I got the one with those ‘peas’ in it, and some Ibuprofen, which Dorothy said might be better for my back problem.
When I got to the ashram, I left my stuff in the car and went in to have dinner. Lasagna night. The food is delicious.
I also found a woman who said I could call her if I ran into problems getting dressed in the morning. At first, she said she couldn’t because she had a lot of responsibilities in the morning. Govinda had said something comparable when I asked him if there was someone I could call for help getting dressed if I needed to. These responsibilities are to the deities. They bathe them, dress them, feed them and decorate them with fresh flowers. It sounds like a lovely daily activity. Such an opportunity to pour out love. Maybe I’ll find something to do like that for once Mike is gone. I need something to pour my love into, something that won’t find my attention intrusive. Apparently, the woman was concerned that I would require an hour. No, only five minutes to help me get my pants on. I wasn’t able to reach them in the morning. Fortunately, I had Dorothy to help me. She told me to order a hip kit. Must do that.
