One step forward, two back . . .

I should know better, by now, than to get too optimistic on this insanity-inducing roller coaster ride, as no sooner had I post the last blog, than Bob segued from one set of complications to a whole set of new ones . . . I started noticing the subtle changes early Saturday evening, before I left for the night. He seemed especially edgy, uncomfortable, restless. He hadn't eaten much all day, and even though he wasn't hallucinating at all, he was definitely preoccupied with whatever physical ailments were now taking over . . . hard part is, he couldn't articulate exactly what was going on. When I or a nurse or doc asked, he would try so hard to explain, but unable to pull out the words, which lead to exasperation and frustration with us. He'd look at me and say, "Don't you know?" I could only answer, no, I'm sorry, Bob. I don't . . .

Then, he began complaining of pain when he tried to take deep breaths . . . his nurse checked all his vitals, listened to his heart and lungs; everything looked strong and sounded clear to her . . . he had taken several walks around the unit throughout the day, and his nurse thought that perhaps he had simply taken on too much on for the day, some exhaustion along with a little anxiety . . . anything I said to him was met with a labored effort to answer my questions, followed by a look that basically told me, "Please, just shut the hell up, Jen . . ." and silence. Finally, he said to me, "I think you should just go now." I chalked it up to exhaustion from a busy day, but still mentioned the changes to his nurse to keep a close eye on him . . .

Sunday, I decided to give Bob a break and didn't go in to see him till the afternoon. I know that having us family around constantly can make Bob more anxious and sometimes even agitated, so I thought having a half day to just rest without feeling like having to "entertain" would be welcomed. I walked the dogs in the a.m., did some laundry, hung it out to dry, then went to my sister, Gretchen's, bridal shower for a few hours before heading over to the hospital. I had called him several times throughout the day, but no answer. When I arrived, Bob appeared to be sleeping, so I tiptoed in as quietly as I could, but a weak voice startled me. "You haven't been here in a very long time . . ."

I asked if he had had a chance to get washed up lately; he didn't remember, so I filled a wash basin with warm water and liquid soap and proceeded to give him a bedside cleaning, from the toes up. As I slowly washed his feet, his legs, his arms, he mumbled, "That feels really good . . ." Yes, the healing power of touch . . . a hospital isn't exactly known for its healing touch practices, unfortunately. Rather, it's mostly poking, prodding, pulling, pushing . . . He was like a helpless baby, I lifted each limb as I washed him, turned him on his side to cleanse his back and stomach. I tried to wash him as gently but thoroughly as I could, as a haphazard pattern of purple and blue bruises in various sizes and shapes dotted his entire body body. When I was done, I helped him into a fresh gown and underwear. He lay his head back onto the pillow and curled up to sleep. Note to self: do this more often for him. . .

Our conversations were still very one-sided, me asking lots of questions, about his day, if he ate, if he got on a walk, if he's slept at all, and more very strained, incomplete answers. I talked to a team of doctors who were on staff for the weekend; they said the lethargy and confusion may still be the effects of the heart attack hanging around. I said I think he's worse off than the day before and it's beginning to disturb me and really bother the hell out of Bob, who seems annoyed than no one can figure out what he's trying to tell us . . .

Today, Monday, I'm even more alarmed with his confused state; his short-term memory's shot, he's extremely lethargic yet highly agitated when anyone asks too many questions or seem too doting or hovering . . . he can't form a coherent train of thought to save his life, but knows this, which only adds to his agitation and frustration . . . he's been refusing medications, saying he just wants a break from all of them right now, feels they're responsible for how horrible he feels right now . . . his nurse has been able to persuade him to take at least his methadone and heart meds, as they are the most important ones, and, because methadone and Dilauded are narcotics, he can't just quit them; he must be weaned very carefully, under close doc supervision.

A few days ago, we were told the confusion likely was because his liver function needs to stabilize and/or because of withdrawal effects from not having his pain meds for a day and a half and that it'll take time for his mind to recover. . . today, the oncology team tells me that his sodium levels have dropped dramatically, and that may be the likely cause of this confusion. I was with him for a few hours this morning, talked to the oncology team for a while. They said they put in an order for renal (kidney) docs to pay Bob a visit and give their assessment on the situation, but that wouldn't happen till later in the afternoon. I tell them, as I told his nurse this morning, I think Bob is slipping, that he's much worse off today than he was yesterday; he lies in bed, breathing quite labored, staring off vacantly most of the time . . . it takes a huge effort on his part to answer any question I ask, and even then, he often can't finish his train of thought. I can see the frustration in his eyes, in the way he slowly lifts his hands, grasping, searching for words that don't come, then drops them back onto the bed in frustration. I ask how long someone can be on these narcotics before some kind of damage is done; I'm told that long-term narcotic use typically doesn't affect the body adveresely

Since there are no more scheduled doc visits until the afternoon, I leave the U to go home for a spell, take the dogs on a walk, just to peel myself away from hovering over Bob and let him try to rest. When I return, I'm told that an MRI on Bob's head is scheduled for the afternoon, to rule out any possible cause of the confusion going on up there; I'm told not to worry (seriously?), that the doctors suspect the sodium level drop more than anything . . .

A member of the OT team is in Bob's room when I enter; he's barely responsive to her questions. When I introduce myself, she said she's glad I'm here because she needs to make an assessment on whether or not Bob should be discharged, and even though he was able to answer all of her basic cognitive questions (month, year, count to 20 forward and back, that kind of simple stuff), she wanted my input about his condition. According to PT and Cardiac Rehab (who, as far as I know, saw him a few days ago), felt he was doing well enough to go home, or possibly to Transitional Care again for a stint. I say, "He's much worse today than he was over the weekend. No way is he going anywhere like this, not even to transitional care. He is very, very sick, and I feel he's getting progressively worse as the days go on, not better. I'm absolutely against discharging him to anywhere right now, until he's a lot better than this." The OT agrees with me, but says the PT and CR made their assessments over the weekend when they worked with him. I told her he's even worse off now than he was last night; I took him on a short walk last night, but there's no way I'd take him or allow him to be taken out at this point. She takes all of my concerns to heart and says she'll make her recommendations based on what I told her, and to maybe have PT and cardiac rehab reevaluate . . .

The renal team arrives shortly before Bob's taken away for the MRI; they tell me their conclusion is that the cause for his alarming confusion is due to the large doses of narcotics he's on, coupled with the pain itself, that both events cause the brain to excrete more hormones that affect the sodium levels . . . hmmm. . . contradictory to what the oncologists just told me in the morning, but they're the kidney experts . . .

I'm also met by the nurse care coordinator who tells me that she's my "go-to" person for any questions regarding Bob's time on 6B—if I need to get a hold of a particular doctor, or if I don't know who to get a hold of, if I'm wondering who'se in charge, she's my woman to sort these things out . . .

Tomorrow is the patient care conference, with every department working with Bob—oncology, cardiology, orthopedic surgery, colorectal surgery . . . I am so hoping to learn more than I do now, regarding what's being discussed about Bob's situation, and where we go from here. Try as I might, the only question I can really come up with for these people is, "Can you help Bob?"