Little victories—no, make that miracles—in the midst of chaos . . .

(pic to the left is Bob, with my sister, Jill, and her li'l peanut, Amelia, who came to visit Bob over the weekend, and deliver a quilt Amelia had bid on at a school auction for Uncle Bob . . .)

Thursday, April 22, 2010

Bob had his stent in yesterday, and will be heading to a transitional care unit on the Fairview campus of the hospital tomorrow, for an extended stay of rehabilitation, so he can work on getting stronger, put some weight on, get some one-on-one assistance to get him as healthy (relatively speaking) as possible before his pending tumor surgery. I wish I could say that outcome happened as easily as typing it, but it only came about because, once again, I had to pull the hysterical wife act—to beg, cry and threaten to chain myself on top of Bob and his hospital bed until someone do something to help Bob in the interim, while we await for the big surgery on his tumor. . .

We all (Bob, his parents and I, and Nancy, too, via texts and phone calls) had been discussing what would happen next, as there had been some talk about discharging Bob today, the day after the stent was placed. I said, not if I have anything to say about it. He's weak, he's emaciated and continues to lose weight, his pain is not managed to a tolerable degree, the panic attacks he's been having have not abated, he has a huge surgery looming in the not-so-distant future, and we need to get Bob as healthy as possible for this very stressful, critical surgery. But they want to send him home today. Not happening. So far, no one had given us any acceptable options from this point out, as far as Bob's health and "the big picture" is concerned, and he's not going home from the hospital until we have that in place.

Penny said, "Why can't there be something like a half-way house for a patient who needs more help and rehabilitation, maybe not as much as he might need in a hospital, but something more than just sending him home again?" On a wing and a prayer, till the next crisis . . . we've talked to doctors, we've talked to social workers, over and over, expressed concerns about issues we've faced and may potentially face, and how to avert them, and if there was such a service, such a facility, we hadn't been told about it.

We're told several times that Bob looks great from a cardiac standpoint; that the stent placement went well, that his heart looks great, and for that, we're eternally grateful and ecstatic, and are well aware how important this is in terms of his upcoming big surgery, a huge victory in this battle. But, overall, from a whole-istic standpoint, he is not well. This morning, Bob told me he's lost even more weight. With all he's eaten (relatively speaking, for Bob, since all this began) since he's been in the hospital this week, he's still losing weight. His pain in his leg was horrific last night (he hadn't gotten is mid-day doses of meds yesterday, due to the stent surgery), so it was several hours, once again, of playing catch-up. Blood pressure still not stable. He's weak, the med plan he was on has made him so lethargic and groggy he can barely keep his eyes open throughout the day, and we have no game plan for what to do, once he's discharged, once again. Clearly, what we've been advised to do at home since his heart attack is not working. Losing weight, panic attacks, unmanaged pain, blood pressure issues, weakness, lethargy, heading to the ER every other day is not an adequate after-care plan, in my book, and we're not going down that path again.

When I got to the hospital this morning, I found Bob awake but tired. He said they finally managed to get his leg pain under control last night, but basically knocked him out cold in the process. On the plus side, he did get 3-4 solid hours of sleep (drug-induced, likely). I wasn't there very long when Bob's palliative care doctor, Doc G.K., came in. We talked about the regimen of medications he's on, that a few have changed in the past day or so—a new nerve pain medication added, and dosages of the others tweaked—and that hopefully the new combination will affect the increased pain Bob's been experiencing. I told her that I did not want Bob going home until everything Bob has been dealing with since his heart attack was thoroughly addressed, which lead to our rather headed discussion about whether or not to discharge Bob today. I said absolutely not, that there are too many things that need to be addressed before he goes home, that I don't think going to the ER every other day is an acceptable plan of care, that there has to be something else that can be done to help him get better before surgery. She tells me that from a doctor's standpoint, Bob can dress himself, Bob can feed himself, he can get up and make a meal for himself, tend to his own personal cares—that doctors and therapists and insurance companies won't deem his situation as necessary for hospitalization.

I said, "He weighs 100 pounds, and continues to lose weight. He's weak, his pain isn't managed well, we're in the ER every other day with various and sundry issues. Bob is not safe to be at home alone right now—his parents help us immensely—they basically move in with us during the week to be with Bob while I go to work, but on the weekends, I feel like I can't even leave to get groceries because of what "might" happen . . . it takes 20 minutes for an ambulance to get to us . . . Bob's precarious health status is a stressful situation for all of us because so far, we've seen absolutely anything and everything that can go wrong has gone wrong in Bob's case, and I feel it's because so many issues with his overall care have not been addressed. We shouldn't be the ones to be making the call between 'is this a panic attack or heart attack?'—too much needs to come together in the next weeks before his big surgery, and some of that needs to come together in a care facility where Bob can be monitored closely until he's better . . ."

Shortly, we're joined by a team of oncologists and again, I repeat what I just said to Bob's palliative care doctor. I insist that Bob stay in the hospital at least a few more days, to gain weight, get stronger. "How sick does he have to get for someone to take this seriously," I plead, over and over. I'm ecstatic that his heart is recovering well, I tell them, but that's just one little piece to the picture. His weight continues to drop—when will his organs start giving out because of the stress of the the medical anorexia? They suggest a dietician—I interrupt, with exasperation. "We know what to do to help him gain weight—give him Ensure, give him calorie-dense foods, try smaller, more frequent meals instead of big ones, use other dietary supplements to add calories—we all of that, but it isn't working. He's losing weight despite that. He's been in such a drug-induced fog all week that he has no energy to get off the bed, much less to much-needed walking and other exercises to increase his strength. We know all of that, and it is not working. What's going on with him right now is beyond our scope. He needs professional help, now. He needed more help after his heart attack, but was just sent home, with a few little sessions with PT and OT in the hospital and a pat on the back. This time, that's not happening."

I "get" it, that Bob's not "sick enough" for the critical care of a hospital, but he's too sick to be home right now, and we've been given no other options, not even home health care, in the interim, to work on getting him better for the tumor surgery, and that's what I want. That's what Bob wants, it's what his parents, his sister, anyone who cares about him, wants for him. To end this cycle of ER trips and get a better grip on his health as we wait out the time between now and surgery.

I was so proud of myself for not dropping f-bombs left and right during that soliloquy (though I think I felt a trickle of blood running down the corner of my mouth, from biting my tongue so hard), but I was crying a lot and I know I kept repeating myself over and over: he is not safe, he is not well enough to go home right now but the only options we have are hospital or home, and I'll take hospital over home right now. That it took 20 minutes for an ambulance to get to our house the week before, that in the state he's in now, it's an enormous amount of stress for everyone—me, his parents, Bob—to have him home so soon. He has a huge surgery coming up and we need help here, people, to get him stronger, healthier, as well as we can get him for this major event. I felt very bad that I did all the talking for Bob and hardly let him speak for himself, but he did tell the doctors himself that he didn't want to go home right now, that he was afraid of repeating the same cycle of ER visits, hospital stays, etc., that he wants to do whatever can be done to help him gain weight, work on strengthening his weakened body . . .

Over and over, evidence of a freakin' anti-proactive system hard at work. . . Forget addressing the whole picture, forget trying to avert crisis—let's just send a very sick patient home and see what happens. Deal with stuff after the fact, rather than making an attempt to prevent them. Funny how the system seems to have no problem paying for endless trips to ER, countless hospital stays that could very well have been averted if a preventive plan had been in place . . . oh, silly me. That's hindsight, we can't predict the future, we can't say that Bob wouldn't have had all these problems if something else had been done . . .

The doctors kept trying to tell me that from a cardiac point of view, Bob is doing great, that the issues that brought him into the ER on Friday are resolved, and that there's no reason to keep him in the hospital any longer. I said, "well maybe not the hospital, but we need another option here." They suggest family, friends, to help with home care. I said, "Oh, sure, we have plenty of support for us, but see, most people work for a living. People can't just drop their lives and come live with us. And besides, right now, Bob's condition is far beyond the scope of what any lay person can do to help him. Right now, he needs medical assistance to get over some major hurdles. We know what to do, but we do not have the training, expertise to do this ourselves."

In the midst of this all, someone mentioned the TCU at Fairview. I looked at them. "What's that?" Oh, it's the transitional care unit at the Fairview campus, we're told, it's not a hospital—patients don't get the critical care that they do in the hospital—they have to be on the road to recovery—it's more of a rehabilitation unit, a bridge between the hospital and home . . . I should have dropped an f-bomb right there, with this revelation. Transitional Care Unit?! THAT'S EXACTLY WHAT I'VE BEEN DESCRIBING HERE, YOU EFFING IDIOTS!!!!!!! MY GOD!!! SUCH A FACILITY, SUCH SERVICES EXIST, BUT WE HAVEN'T BEEN TOLD ABOUT THIS UNTIL NOW???!!!?? We needed this right after the heart attack, you freaking morons! A guy undergoes 12 weeks of ass-kicking chemotherapy, then has a massive heart attack, and gets sent home two days later, no after-care plan offered . . . even though one exists . . .

But then, I'm told about the insurance quagmire that may prevent Bob from using the services—he can dress himself, he can feed himself, he can get around, slowly, yes, but he is ambulatory and based on what PT and OT have said about Bob, he moves about quite well . . . that, and previously, during other hospital stays, he's told therapists that he'd rather be at home than in the hospital, so that's what's been recorded in his charts, and that's what they'd base their decision to admit Bob to such a facility . . . well of course he'd want to go home, but did anyone discuss the option of the TCU to him? To me? A resounding NO!!!! I just kept pushing, pushing, pushing the point that Bob is in no state to go home right now. That he needs help, we all need more help than has been given, at this point. That no doctor would do surgery on him right now, given his current state of health. He's not going home. Period. The doctors said they would review Bob's situation, look into the TCU and get back to us as soon as they could.

A social worker was called in, and she explained the transitional care unit to us; that it's a bridge between hospital care and going home, that people with various conditions are there rehabilitating, getting therapies—PT, OT, dietary and other services—to help then get better before going home after a critical illness or injury. The University hospital has a facility connected to their Fairview campus, but several nursing homes around the Metro area offer such programs, and they refer to many of them, depending on each patient's insurance. She'd do the legwork of contacting Bob's insurance company, to get the ball rolling and would be in touch. I said, "Just for the record, we've spoken with several social workers throughout this whole ordeal, and not once, has anyone mentioned this option to us. It should have been done after Bob's heart attack, but not once. This is a very important service that all patients need to be aware of . . ." She gave a lame excuse—that maybe Bob was told about this when I wasn't around (which could be true, as he has been bombarded by countless hospital professionals all day and I can't be there 24/7 to intercept the information), or that it might not have been appropriate to recommend this to us earlier, or that, based on what PT and OT and others who've worked with Bob's recovery in the hospital have seen, they wouldn't have made the recommendation because he was doing so well while here. And that I shouldn't forget that I can ask for help from them any time. . . what the hell have I been doing all this time?! And, how do I ask for something that I don't even know exists? Isn't that their job. Again, I say, as I have over and over and over, "I don't do this for a living . . .I don't know what to ask, all I know is what I see, and what feel, and that's the best I can give you. . ."

But see, what these people in the medical arena fail to understand is Bob's level of determination. He possesses an immense level of strength, determination, drive, sheer will, fight instinct, than anyone I know or ever have known. Even while in the throes of debilitating chemotherapy, even in the wake of a massive heart attack, Bob survives, continues to surprise everyone with his quiet warrior spirit, so "they" label this as "doing great!" But, I am pretty confident that most of us could not have endured what Bob has endured, at least not as well as he is. His therapists see that he can walk, that he can take care of his personal needs, he can feed himself. To them, that's good enough. But, even SuperHeroes need a little help, a little rehabilitation, to refuel their SuperPowers. . .

As we're waiting in Bob's room to hear the "final word" on whether or not his insurance will approve the transitional care, he said, "Jen, look at this. I'm sitting on the bed. Sitting. And it

doesn't hurt much." I looked at him—he hasn't been able to do that in six months. Six months, people, and suddenly, after all that had gone on this morning, here he is, sitting on the edge of the bed. He got up and walked over to a harder chair in the room and sat down. He said, "This is okay, too. I mean, I couldn't do this indefinitely, but my pain is at a 2, and I could do this for quite a while." I had to take a picture of this, and I hope he doesn't mind that I post this here, but seriously, everyone, this is a huge freaking deal. I don't know if it's the new meds kicking in already or what, but whatever it is, we'll take it!!!

We'll post later more info about the transitional care unit, where it is, whether or not Bob can have visitors, etc. My guess is he'll be there at least a week, and will be a pretty intense rehab program (I like to say, "Bob is in rehab." Makes him sound like a bad boy of rock 'n' roll . . .), but it will be a more relaxed environment than a hospital setting. It'll be like going to a fat farm, only Bob'll be working on gaining rather than losing weight.