Lovely fall day . . .

These days—these weeks—at Bethesda are going to be roller coaster kind of days, ups and downs, over and over. . . past few days were tough for Bob, mentally and physically. So many new things to adjust to in the new setting, new routines, new ways of doing things, exhausting, endless interviews, exams, evaluations, assessments . . . then the wound vac, which worked just fine the day it was inserted (installed? applied? not sure of the correct terminology here . . . ), but yesterday, was fraught with technical difficulties. . .

Yesterday was the toughest so far, more so mentally than physically, but tough, regardless. Had some technical difficulties with the wound vac, as I'd mentioned; kept malfunctioning, setting off alarms and flashing scary messages like, "Leak Alarm!" across the screen of the pump, which only added to Bob's anxiety about the whole thing. His nurses kept assuring him it was simply a faulty machine and had nothing to do with the wound itself, but when the machine was swapped for another, and still had problems, we really started to wonder. It's most likely the location of Bob's wound that's causing the problems. The curves of his back and spine, as well as the waistband of his sweats being so close to the drainage tube that runs from the dressing to the pump, are making it difficult for the vac to get a good seal. Eventually, his nurses found a way to keep the adhesive dressing in place and the vac started working again, without interruption.

I also think Bob was pretty wiped out from the previous days' PT/OT sessions, and the constant

flow of people in and out of his room interviewing, assessing, examining him all day long, and the fact that he hasn't been sleeping well at night . . . on Friday, he told his nurses that Friday is his Crabby Day. Yesterday (Saturday), he said that he was extending his Crabby Day to Saturdays . . . his nurses teased him, "Well, if that's all you got, Bob, we've got it pretty good!" or, "Bob, if all of our patients' Crabby Days were as "bad" as yours, our jobs would be a piece of cake!" I told him he could have Crabby Days seven days a week, if this is as bad as it gets . . . he's earned 'em, for sure . . .

Later, he said, "Jen, I didn't tell you that I cried all morning, before you got here. . . and it about the dumbest things, things I shouldn't even be crying about," he said. Like what? "Like how mad I am about everything right now . . . so mad and so jealous, that everyone else can go about their days, go where they want, do what they want . . . and here I sit, wearing a fucking diaper, in a wheelchair, not able to walk, not knowing if I'll ever be able to walk well enough to do the things I used to do . . . and then getting mad at myself for getting mad about such stupid, petty things, but I couldn't help it. I just couldn't stop crying . . ."

I sat in silence, listening to him and at the same time, thinking about the psychologist who had stopped by on Friday. She asked Bob if he ever felt the need to talk to someone, just to get some things out, to have someone just listen while he vented a bit. He shrugged and said, "What's there to say? I could spend ten minutes bitching about how I feel, and then after that, I'd just be repeating myself, rehashing the same things over and over. How's that going to help me?"

I couldn't help thinking, as Bob was telling me about his morning, that he has a helluva lot more than ten minutes' worth of things to say about all this. All I could do was reassure him that he's entitled to being mad, sad, crabby . . . His life has sucked, big-time, for the past year and it's okay to start saying something about it. His nurses can take it, I can take it, his mom and dad get it . . . we won't take it personally . . . I didn't want to leave him yesterday, but I could tell he was really tired, so I stayed long enough to help him get his dinner, then back into bed. When I tried calling him to say goodnight, he didn't answer his phone.

Today, is another story. I called to check in, see how his night went. Bob answered his

phone (something he hasn't often done lately) and his voice sounded so strong, so much more determined than it did yesterday. He told me to take my time coming in as he was just getting up and ready for his morning meds, with breakfast soon to follow. When I got to the hospital, he was sitting up in his wheelchair, watching TV. I asked his nurse if it would be okay to take a little spin outside, if Bob was up for it. She agreed it would be great to get out for some fresh air before lunch. We unhooked his IVs and went out across the street to the little sculpture garden/park, which is part of Bethesda's grounds. I had to take pictures of all the sculptures we passed, then took a picture of Bob, with the capitol building behind him, quintessential St. Paul scene, like a couple of dorky tourists . . .

When we got back, lunch was waiting for him. Ate his whole egg salad sandwich (sans crust), some chips and fruit. After lunch, we rolled out to one of the sitting areas, and played a cut-throat game of Scrabble. It was truly neck 'n' neck, going back and forth; I was ahead by just a few points 236 to 224, sumthin' like that, when we both realized that the board was dang near full of tiles, yet we still had a boatload of unused letters in the bag . . . Bob looked at the little chart on the game board, and said, "Okay, I think we're playing with at least a few extra tiles here—there should be 8 O's but there are already 10 on the board, and I have a few more sitting on my rack . . ." I did notice another Scrabble board sitting on the shelf where I'd found this one, now that he mentioned it; guess the two games somehow co-mingled and had baby tiles . . . we finally end the game in a truce and a promise of a rematch, and headed back to his room. It was mid afternoon when Bob looked at the clock and said, "Do you realize I've been up and going since 8 this morning? Without a nap, without having to lie down because I felt dizzy?" And the vac seemed to be working just fine, too, we noted.

Later, my sister, Jill and her daughter, Amelia, stopped by for a visit, bearing Halloween treats for Bob, as well as a bag of movies for him to watch. Jill is ginormously preggers right now—"technically" about six weeks left of her pregnancy, but just found out her babe is already about 7 pounds, 6 oz. already (no gestational diabetes or anything, just a honkin' huge baby ready to bust out of her normally petite body). Bob said, "Oh, Jill, we have a present for you—Jen, get them out of the closet." I started laughing, remembering a conversation we'd had earlier. I opened the closet and pulled out one of Bob's diapers (though we prefer to call them loin cloths). "We figured you could use a few of these on hand for when the baby comes," Bob told her. I thought Jill might go into early labor, laughing so hard . . .

Bob finally hit his brick wall after that and asked to help get into bed to lie down for a while. That is an ordeal in itself, as he has a gigantic inflatable bed, which helps to redistribute the pressure under his wound site (as well as all parts of his body), but it's too high off the ground when fully inflated, to get on and off. It has to be completely deflated before Bob can get out, and when he wants to get back in, we get him onto the deflated mattress, he lies down on the hard surface, then I turn the valve to reinflate it, elevating him higher and higher as it fills with air. He fell asleep almost immediately; Jill and Miss A said their goodbyes, with promises of stopping by again sometime soon.

This plaque is on the wall just inside the main entrance to Bethesda. The picture on it of a sculpture in the front garden. In case you can't read this, it says: There was in Jerusalem a pool called Bethesda. An Angel of the Lord went down at certain seasons into the pool and troubled the waters. Whoever stepped in first was healed of whatever disease he had. John 5:4. Kind of a lofty assumption to think Bob will be "healed of whatever disease he had," but there are signs of definite improvement, even in the short time he's been here . . . had a feeling of comfort and peace, reading the plaque . . .

So, today, the roller coaster went back up. We went for a walk. Played Scrabble. Bob had a good appetite, ate more than he has in a very long time at each meal. Had visitors, and a ton of movies to watch (he had me pop in a DVD of Kolchak: Night Stalker before I left), pain is well-controlled. I noticed that when he gets up to his walker from a chair, he does it almost effortlessly, almost as if he didn't need the walker. And when he sits up in bed, he's pushing himself to an upright position (I or a nurse still has to help support his legs) quicker, with less effort every day. He sat upright for most of the day—something he hasn't been able to do in nearly a year, if you recall, peeps. The simple act of sitting . . . Before I left tonight, Bob said, as he often does, "Thank you, for everything you do for me. I can't tell you that enough . . ." I said, "Thank you for the good day we had together today."

"Was it a good day?" he looked at me, not questioning my statement, but truly asking, as though he didn't know. It's been so long since he's had a truly good day, I don't think he even recognizes them. Or, maybe it's just that my definition of a good day and his definition are still light years apart . . . a few more like today under his belt, and he'll come to know them again . . .