Saturday, January 2, 2010

home and thanks

I got to Alexandria, Virginia by 3PM, but instead of going straight home, I had a late lunch with my brother David, who very graciously paid for his big brother. Dad and Mom arrived at Walter Reed in DC not long afterward. I got home from lunch around 4PM, and managed to unload the van and even begin unpacking before Dad called from the hospital to say he was ready to be picked up. I drove to Walter Reed and picked Dad up at the facility's Georgia Avenue gate (the regular 16th Street gate is closed on weekends); I didn't go in to see Mom. According to Dad, her new berth is tiny.

Dad told me that Mom had endured the trip about was well as could have been expected. Her vital signs suggested some agitation during the move, but once she was settled into her new ICU berth, she began to calm down. I was a bit worried to hear that her diastolic pressure was, at one point, over 90, but I'd seen her blood pressure climb even higher while she was in New York.

Pastor Jeri had coordinated with Mr. and Mrs. Morrison from church, as well as with Mrs. Burns, and all three fellow congregants arrived at our doorstep with dinner. My brother Sean had stopped over and, Atkins disciple that he is, he was delighted to see that part of the dinner consisted of rotisserie chicken, which is about as Atkins-friendly as can be. Dad, Sean, and I offer our thanks to Mrs. Burns* and to the Morrisons for their food, and we thank Pastor Jeri for coordinating the drop-off.

Dad's been going through the pile of mail we've received in our absence. While we were in New York, we had had to request that the letter carriers stop delivery and hold our mail at the local post office; David, who had originally come back to northern Virginia with the intention of returning to New York (all this was before we found out that Walter Reed had a bed for Mom), picked up the mail and even sorted it all for us. We've received a bundle of Christmas cards and a few gifts for Mom. Dad wants to read the cards to Mom tomorrow. Mom received a scarf from one of her long-time friends... it's a shame she'll never be able to wear it. Perhaps we can brush it over her fingers.

Tonight, we had a bunch of unpacking to do. I took care of the kitchen items, my own clothing and toiletries, and the "media centers," i.e., my two computers. Dad took care of his and Mom's suitcases and bags; he also combed through the mail, throwing away junk, keeping cards and gifts. We've got some "Sorry we missed you; you have a package" postcards from the post office; we'll have to retrieve those parcels on Monday.

As I worried would happen given all the precipitation in the DC area, my downstairs "dungeon" bedroom suffered some serious leakage. The room smelled dank and musty when I entered it, and I'm running a dehumidifier in there right now (it's right behind me as I type this). The dehumidifier will need a few days to take care of the problem-- a problem that has occurred many times before over the course of our residence here, despite our best efforts at sealing and drainage. The cause of the problem may lie in a cracked foundation: as Dad has noted in the past, the leaking often occurs right through the walls. Years ago, it also happened through the windows (the dungeon's windows are at ground level, slightly above eye level for me), but our new windows have taken care of ground-level leakage and seepage.

We're not done settling back into the house, but we're too tired to do any more tonight. We'll start again tomorrow.

*We've learned that Mrs. Burns's wonderful children aren't really children anymore: they celebrated their 14th birthdays today. Their actual birthdays are on Sunday, but Saturday was party day. Congratulations, Beth and Brian, on turning 14!


the empty coat

A few days back, I asked Dad, "So from now on, Mom will never be riding in the van again, will she?" Dad said yes, that's right. When Mom fell ill on the night bridging December 21 and 22, we had passed a threshold.

Since that night, I've been in and out of this hotel room a few times per day, which has meant a great many trips to the coat closet. Inside that closet hangs Mom's empty coat-- a garment she'll never wear again. Mom has reached a point where she now lies beyond our help: from now on, every time she needs to be moved, it'll be professionals, not her family, who do the job.

As I pack our possessions for travel back to northern Virginia this morning, Mom's empty coat is one of the items I'll be folding up and taking back with me.


Friday, January 1, 2010

onward to the next phase

Many thanks to my buddy Mike for coming up to New York to spend a few hours with our family. Mike's a busy father of three; it was good of him to take time out of his schedule to be here.

Mom's ambulance, which will take her from New York Presbyterian Medical Center down to Walter Reed Army Medical Center (WRAMC) in DC, will arrive for Mom at 9:30AM. Dad thinks that departure might not be until 10:30 or 11AM. He'll be waking up at 7AM and plans to be over by Mom's side by 8:30AM at the latest. I, meanwhile, will wake up at the same time, get myself ready, pack up the van with everything except whatever paperwork Dad needs, and check out along with Sean. We might depart as early as 9AM; Sean will drive separately. If we run way behind, we'll depart by noon at the latest.

Dad will ride with Mom down to DC; I'll drive alone to northern Virginia. It's likely that I'll arrive at my destination first; Dad thinks the ambulance will be legally constrained to drive more or less at the speed limit, whereas I'll probably be hitting 80 along with the rest of the traffic, barring traffic jams. Once I get home, I'll unload the van and prep it to pick Dad up from Walter Reed.

Mom will be placed in Ward 40, which is billed as the coronary care unit of the WRAMC. I'm not sure why she'll be there instead of the pulmonary care unit, but I imagine this has something to do with the availability of beds. She probably won't be there long: we need to decide whether she'll be moved to a homebound hospice situation, or to an institutional hospice. Right now, it's hard for us to see beyond Saturday.

I'd like to thank my buddy Dave for his private support and repeated offers of help. Thanks, as well, to Pastor Jeri for her support and to Pastor Kim for coming north to visit (even though I personally didn't see him). I've learned from Pastor Jeri that Mrs. Burns and the Morrisons will be preparing dinner for Dad and me. We appreciate their kind gesture. Unfortunately, we still don't know when we'll be home for the evening; Dad will likely have to work with WRAMC staffers on Mom's paperwork, and he might also want to linger with Mom in her new setting (as will I). 8PM is my best estimate for when Dad and I will finally be home. That might change.

The weekend will be mostly about settling Mom in and settling ourselves down, using the quiet time to plan our next moves. There isn't much left to plan; we're at the endgame now. Here on in, our only real goal is to keep Mom comfortable during her final decline, and to settle final arrangements.

Mom herself seems beyond caring at this point. She's only slightly reactive to stimuli, at least according to what we can see and feel and read on the various monitors. I have no notion of what her inner life is like, or whether she might even properly be called "conscious." As always, I can only hope that she floats in a comfortable fog, suffering nothing at all, closing her poor, swollen eyes as much as possible. Does she take any comfort from our presence, from the sound of our voices? Does it warm her heart, the way it warms mine, when I place her hand atop my hand? Or is Mom's entire existence now focused on the ruthless, mechanical rhythm of her ventilator, and the painful intrusion of the other tubes leading down her throat? Her face still registers pain when she gets suctioned. I feel that pain-- perhaps only bluntly and vaguely, but I feel it.

Mom doesn't deserve to suffer. If I could take her place, I would, but I can't. All I can offer instead is this simple wish: may her mind retreat from all the world's noise, and from the ugliness of the medical process. May she know some form of peace before the final, permanent stillness.


the slow prep

My buddy Mike is on his way up to New York as I write this. Dad's at the hospital, nailing down tomorrow's departure time (for Mom's ambulance) and making other arrangements. My brother Sean just stepped out of the hotel room for a few moments, and I'm awake for no reason I can fathom.

We'll be leaving New York tomorrow. In theory, I can start prepping for departure today. There are no more space considerations for the minivan: I'll have so many open seats that, even if we went on a shopping spree, I'd have plenty of room for extra bags and boxes. When we came up to New York, interior space was a problem, but now, for the return trip, I'll be the only one in the car: Mom and Dad will both be in the ambulance going down to Walter Reed. Sean drove up separately, and David-- who had planned to return to New York on Sunday-- is already in the DC-Metro area and can just stay there. So along with the van's rear storage space (after folding over its rear seats), I'll have three extra chairs on which to place everything. We've also eaten up the majority of the supplies I'd brought with us, so there's actually less to bring back.

All in all, there's really no stress about prepping for tomorrow's trip, so I plan to take it slowly.

Happy New Year, all.


our humble toast

We watched "Apollo 13" at the hotel until a little after 11PM, then went over to see Mom. I brought along three paper cups and some white grape juice; our intention was to sit with Mom and greet the new year together.

The ICU crew was a jumble of new faces; most of the regulars were off somewhere. Mom was wearing the same stick-on protective "goggles" that had been placed on her face earlier in the day; her eyes have been so irritated and swollen that they can no longer close completely. Today's nurses, I discovered, had failed to apply the proper eye drops to Mom, using the regular drops instead of the petroleum-based ones. Mom looked awful.

Sean declared his inability to toast the new year with the grape juice I had brought; his Atkins regimen demanded something sugar- and caffeine-free, so he went to a drink machine and bought a bottle of water. I flipped the channels of Mom's TV until I found a live feed to Times Square-- not the Dick Clark/Ryan Seacrest celebration, but an honest-to-goodness live feed of the square, unadorned with any ticking clock in the corner to alert us to how much time we had ("five minutes!") to break out the drinks. The only timer we would see was the one at Times Square itself: the huge video clock and the dropping ball atop One Times Square.

We prepped our drinks, we three guys, and toasted the New Year. I acknowledged that the year was going to bring sadness, but I also expressed my hope that it would bring a measure of happiness, too. The words felt hollow, and no one else expressed any wishes or hopes for the new year.

Poor Mom was trying to sleep, but she was also more reactive to our touch than she had been before. Her half-closed eyes would try to pry themselves more fully open every time I patted her right hand, so I stopped patting it, and we all strove to speak only in low tones. Not that we spoke much: there wasn't much to say.

Sean left first; some of his New York friends were having a get-together. Dad and I spoke briefly with a respiratory tech who came in to look at Mom and tap some data into the room's computer. She contemplated doing a bit of suctioning, but decided against it because Mom needed her sleep, and such a procedure would have been painful. The tech left, and Dad and I left soon thereafter.

So there we are: we ushered in the new year with paper cups of white grape juice and water, with quiet toasts and one humble wish, and with Mom lying in front of us like a ruler on a catafalque. We're looking forward to taking her back down close to home. I'm hoping Walter Reed has learned something since its 2007 neglect scandal, and will take good care of Mom. They have large shoes to fill: despite the recent problem with Mom's eye drops, I've been generally pleased and impressed with the New York Presbyterian Medical Center's ICU staff.


Thursday, December 31, 2009

giving it a rest

I had thought I might have the energy to write a "year in review" post, but in the end, I don't. If you've followed this blog since April, then you know how the year has gone for me and my family. Simply review the "events in a nutshell" entry, read the posts for the last two months, and you'll be up to speed on what 2009 has brought us.

We'll be heading over to see Mom in the ICU at 11PM, and will remain with her to see the new year in.

Happy New Year, all. May 2010 be a year of peace, prosperity, and happiness for you.


confirmed for Saturday

Dad's done an amazing amount of legwork these past few days, and today was the payoff. Mom's now confirmed for a bed at Walter Reed Medical Center's ICU, and she'll be transferred on Saturday-- probably Saturday morning. We're checked into our current digs until Saturday, anyway, so the timing works out well.

The move to Walter Reed will buy us time as we decide whether to take the home-care hospice route or the more standard, institutional hospice route. Our thanks to Dr. Ed Hayes for suggesting that we consider Walter Reed's new hospice facilities.


Mom to leave soon

Mom's been accepted at Walter Reed Medical Center's ICU. The only question, at this point, is when she'll be leaving. The transfer might happen as early as Saturday; otherwise, Monday is more likely.



Dad has discovered that someone was misinformed: National Naval Medical Center has no hospice facilities. We're looking at other options.

In the main, it seems that all other elements are in place: Mom has been deemed transportable, as long as the transport vehicle has a ventilator; we've secured a New York-based transport service that can take Mom wherever she needs to go, ventilator and all. The only question is where Mom's going. To a hospital? To a hospice care facility? Home, with some sort of specialized 24/7 care? We don't know yet, and with the New Year upon us, we're once again going to have to wait a few days before the situation can clarify itself. Meanwhile, Dad's trying hard to work with the social worker here, as well as with Dr. Berlin and his teammates.

My buddy Mike is heading up here tomorrow; he'll spend the afternoon with us, arriving in NYC around 1PM, then taking the 7PM train back to the DC area.

UPDATE: Dad says Andrews Air Force Base has no facilities for Mom.


rolling out soon

I've finished making Dad some lunch, and will be toddling out to see Mom soon. I hope she's doing better than she was last night.

Later today, I suppose I'll be writing my "year in review" post. As you can imagine, the tenor of that post will be substantially different from the one I wrote last year.


better and worse

Mom definitely got the shampoo treatment. Her scalp, which had looked flaky, scabbed, and generally unhealthy when the doc took off Mom's helmet earlier in the afternoon, looked much better when we saw her at 10:45PM. The entire surface of her scalp remained covered in spots and scabs, but almost all the flaking was gone, and the exposed skin was pinker and smoother. Mom's hair looked a lot better, too: less wild and matted. (She doesn't have much hair, to be sure, but back when she was still interacting with the world, she did care about what little she had.)

The bad news is that Mom remains diarrhetic, and while we were with her, her pulse-ox (a measure of oxygen saturation in her blood) plunged from the high 90s to the low 80s, and stayed in the 80s. This caused one of Mom's machines to warble in alarm, and attracted the attention of both the resident and the respiratory tech. The doctor played around with the controls, but the tech-- who Dad says knows her job quite well-- scolded the doctor and reoriented the settings such that Mom's pulse-ox reading went back to the mid-90s and stayed there. The current settings on Mom's ventilator are, if anything, a step backward: she now has to rely more heavily on the ventilator to breathe, and to make sure enough oxygen perfuses through her bloodstream.

Dad and I had planned to leave at midnight, but Mom's crisis compelled us to wait for her to stabilize. We didn't leave the hospital until around 12:30AM.


Wednesday, December 30, 2009

return of the Sean

Sean is back from his trip down to Virginia. He said traffic was terrible on the New Jersey Turnpike, just as it had been for us. His friends are supposed to be throwing a sort of consolation party for him tonight, so he's gone off to see Mom first, and then will head out to meet with his friends.


helmet, shampoo, bloody mouth, transportation

I was over at the hospital from about 1:45PM to 4PM. Dad and David got there earlier, and David had to leave to catch his train back down to northern Virginia.

Mom was, by some standards, doing better. When I came in, she was moving her left arm ever so slightly-- straightening it out and moving her shoulder in a manner reminiscent of a shrug. Around 2:10PM, I noticed that the left side of Mom's face seemed to have developed some sort of rash; it was patchy and red. We had, on several occasions, asked the docs and nurses whether they had been checking Mom's scalp regularly. They claimed they had been, but from what I could see, they hadn't done a thing with the top of Mom's head. With one of the docs there, we asked that Mom's helmet be removed to allow her scalp more of a chance to breathe.

And at that point, a rather bizarre and embarrassing exchange ensued: the doc asked, "You mean it's OK to remove her helmet?" David and I, somewhat taken aback, told the doc that we had assumed that they were keeping the helmet on Mom's head because they might have needed to move her from her current bed to another one. The doctor, for his part, was mortified. "No, we left her helmet on because she came in that way, and we assumed there was a special reason why it had to stay on." It was a classic example of lack of communication, and although I hesitate to speak in terms of "fault," I think it's fair to say that both sides, our family and the medical staff, dropped the ball on this one.

Luckily, the nurses were put on the case, and by the time I left the ICU at 4PM, they were prepping Mom for a "dry shampoo."

Mom's still completely dependent on her ventilator, but they've turned the setting down pretty low to allow her to make more of her own effort at breathing. She seemed ever so slightly more conscious today-- not in a truly "interactive with her environment" sense, but more in the sense that she was aware of the tubes down her throat and was trying to cough them up.

Mom coughed a lot while I was there, and while the docs say there's not much fluid in her lungs, her mouth seems to be generating a variety of secretions. Blood is also in the mix: the nurses told David that Mom had been biting her tongue. Mom had had a plastic bite protector in her mouth for several days; it's a piece of plastic that keeps the teeth from coming together. The protector was then removed for a couple days, and I guess that's when the tongue-biting began. She's got another protector in her mouth now, and the family has been authorized to use a nearby suction tube to suck out whatever buildup we see, whenever it approaches her lips. I had to do this several times while I was with Mom.

Otherwise, I spent my time in the ICU sitting in my default position: next to Mom's left side, with her hand on top of mine, radiating maternal warmth downward into my flesh.

Dad, meanwhile, was constantly in and out of the ICU as he dealt with a New York Presbyterian Hospital social worker and with Dr. Berlin, both of whom were trying to help Dad arrange the next phase of Mom's existence: transport back to the DC-Metro area-- probably to the National Naval Medical Center-- and installation in an acute care or hospice environment. The latest information Dad has is that NNMC does have a hospice facility, but their ICU may not have room for Mom, since they're dealing with an influx of war-related casualties. I don't see this as a problem for Mom: the NNMC hospice sounds more like the logical place for her to be, not the ICU.

Dr. Berlin seems to think that Mom is, as things stand, transportable with a ventilator, and that the question of "pressure versus volume ventilation" isn't even an issue for her. The problem right now is that Physicians' Transport Service (PTS), a Virginia-based medical transportation service, isn't licensed to drive Mom to a destination in Maryland. Going from Virginia to New York to Virginia wouldn't have been a problem, but NNMC is located in Bethesda, Maryland. Dr. Berlin and the social worker, Tara, are working on finding a New York-based transport service that would have no problem taking Mom to NNMC.

I've strongly suggested to Dad that, wherever she ends up, Mom should get a room to herself. If she can't spend her final days in her own home, I'd like her to have a room that we can make as homey as possible for her. That's not as easy to do when you're sharing your room with someone else. David warned me that this would mean spending more money. I'm sure it would, but it might be worth it in this case. I want Mom as happy and comfortable as possible. Surely that's worth spending extra.


off to see Mom soon

Last night, I slept in a bed for the first time since I got to New York (I've been using my sleeping bag and a camper's foam pad, along with whatever hotel pillows have been available). Sean is down in northern Virginia; he'll be back in NYC this evening, so in the meantime I decided to take advantage of the temporarily-opened space.

Dad left for the hospital earlier this morning to continue working on arranging transport for Mom back to the DC-Metro area. After hearing iffy news about the Woodbine care center, Dad focused his attention on the National Naval Medical Center, which lies across the street from the National Institutes of Health (NIH), where Mom had been visiting Dr. Fine for her second-line therapy. Dad thinks the NNMC will provide better, more conscientious round-the-clock acute care for Mom, given her respiratory needs. He and Mom have been through NNMC before for various exams, therapies, and MRIs; Dad has a very good impression of the place as a whole.

I woke up and decided to make grilled cheese sandwiches-- a logical choice, given the supplies we have. I'm doing my best to save the family's money by cooking from our own resources, but we've been adding to our expenses by buying extra materials as needed. Luckily, we've had no shortage of free fruit thanks to the two edible fruit bouquets that were delivered to us. Those have been quite a godsend. In any case, despite the extra supplies-- both purchased and delivered-- we're whittling down the original mess of food that I'd brought with us. Once most of the food is gone, I told Dad that I plan to take a break from cooking in order to sample some of the simpler, cheaper fare that New York has to offer.

Dad, meanwhile, would like for Mom to go home on Monday. We have no way of guaranteeing that this will happen, but I can understand Dad's impatience. We didn't come up to New York just to stick Mom in an ICU; we had come up with a specific mission, which failed. At this point, all we want is for the final hill of the roller coaster to go as smoothly as possible for Mom. If NNMC can help with that, then good.



David and Dad both felt that, tonight, from about 10:30PM to midnight, Mom seemed relaxed for the first time since her entry into the ICU. I wasn't seeing what they were seeing, but their intuitions about Mom are no less valid than mine.

Mom did seem fairly peaceful when we came in. At one point, her blood pressure was extremely low, but the ICU staffers weren't overly concerned: next to the systolic/diastolic fraction on the vital stats monitor, there's a number in parentheses that the staffers consider far more important. I'm still unsure what this number indicates. Dad ventured that it might be an average of some sort, but when I mentally worked out the math by averaging Mom's systolic and diastolic measures, the result didn't match the number in the parentheses. David thought the number might represent some sort of average over time, but without knowing more, I have no idea what that might mean.

Dad, who's dead tired from all the calling and organizing he's engaged in, left a bit early-- around 11:30PM. David and I stayed until midnight, then we left Mom to her repose. May she rest well.


Tuesday, December 29, 2009


A few quick updates:

1. We said good-bye to our relatives sometime after noon. It was good to see them, even for a brief while.

2. We've made explicit our request for DNR (Do Not Resuscitate). Although we have an Advance Medical Directive for Mom, it's not quite the same as the DNR request, which applies specifically to the CPR and CPR-related context, i.e., the attempt to restart Mom's heart should it fail. At the moment, heart failure isn't an issue, but as the cancer advances (and if Mom's infection worsens), it might become one.

3. Dad's looking into hospice and medical care at places like Woodbine in Alexandria, and the facilities at the National Naval Medical Center. I'm a bit iffy on military care, having seen the inconsistency with which Dad's been treated over the years.

4. A service called the Physician's Transport Service can, for a fee, take Mom down to Virginia when we need them to-- ventilator and all, if necessary. Dad thinks the fee canbe covered by one form or another of his various insurance policies.

5. In case I haven't made it obvious, we have officially stopped looking for further treatment for Mom's cancer. At this point, Mom is too far gone. Dr. Boockvar gave her three months, so now it's really a matter of keeping her comfortable and allowing the cancer to finish the job it cruelly started months ago. We tried talking with Duke University and M.D. Anderson, but Dr. Friedman at Duke said it would be inhumane to oblige Mom to travel down to Duke for testing and treatment, given the state she's in. The same would apply for M.D. Anderson.

6. Sean's been back in the DC area since 11AM or so. He's been given a list of "to-do"s by me and Dad, all house- and paperwork-related. Sean's got his own list of tasks to perform as well. I know it can't be easy for him to be cut off from his income like this, especially with bills piling up. Anyway, we'll see him again tomorrow.

And that's where we are.

UPDATE, 10:15PM: I neglected to mention that a PICC team came over in the afternoon and installed a PICC line in Mom's right arm. The nurses also removed an IV line from one of Mom's ankles, but left the other line in.

Unlike the previous times that Mom had had PICC lines installed, we're pretty sure that Mom will never again be awake or aware enough to try pulling this new line out.


one by one they go

My brother Sean departed for Virginia this morning to take care of some personal affairs. Later today, our Texan relatives will be taking the bus back to Virginia to be with more of their loved ones. Tomorrow, my brother David will be driving back to Virginia to take care of some personal affairs as well. Sean will return tomorrow; David, in a few days.

So by this evening, it's going to be just Dad and me watching over Mom. My brothers were worried about leaving Mom this way, but they're gambling that her condition won't change significantly for the better or for the worse over the next several days. I'd say it's a good gamble: Mom's in a sort of medical limbo right now. We can never be absolutely sure that her condition will hold, but I suspect she'll remain stable for the next little while.


I hear you

About twenty gazillion people have emailed or commented that "the last thing to go is the hearing, so talk to your mother."

OK, gotcha, message received. You can stop sending that particular comment now. Thanks.


late visit

We went over to see Mom a little after 10PM. Uncle John was there, sitting in a chair by her bedside. Mom was quiet, the ventilator breathing for her, making her look as if she were experiencing an interminable series of hiccups.

Later on, a nurse came in to work on Mom, and we noticed that Mom's vital signs were improving: lower blood pressure, lower heart rate, etc. This apparently had to do with the nurse's adjustments to the ventilator; they're still trying to wean her off it.

Tonight I learned that ventilators come in two major types: those with "volume-delivered" air, and those with "pressure-delivered" air.* The latter type is stronger, and is consequently better for allowing air to reach deeper into the lungs. The former are often used in hospices and transport vehicles; for Mom to survive on such a ventilator, she'd need to be substantially more robust than she is.

There wasn't much for us to do except sit or stare or hold Mom's hands. As has been my wont, I periodically drifted off into a light nap. Another nurse came in to say that they were planning to wash Mom and change her bedding, so we left around midnight. For me, at least, there seems less and less to be said.

*For what it's worth, Wikipedia offers an extensive study of ventilator types and subtypes.


Monday, December 28, 2009

not looking good

Mom was totally unresponsive while I was there. I noted with a pang that Mom's tear ducts had puffed out to the point that they were preventing her eyes from completely closing. We just learned that this is because of the amount of fluid the doctors have had to pump into her-- not because of irritation resulting from dryness, as I had thought.

Tears come routinely now, every time I sit next to Mom. I gently rub her stomach; I hold her hand; I caress her forearm or her face, and the tears come. "Don't mind me," I told my young cousins. "I'm leaky all the time these days."

We had to leave at 6PM so the nurses could give Mom a wash. We'll be back to see her again later tonight.

On the hospice front, things aren't looking good. Medicare apparently covers very little in our situation, and arranging for care on the fly isn't easy, as Dad is discovering. We'll keep plugging away at it, though. Our thanks to both our pastors for their advice in this area.


a fitting metaphor for life these days

I got my haircut and paid with Dad's credit card. While walking back to the hotel and speaking with Dad on the cell phone, I got pooped on by a passing bird ("passing" in both senses, I guess: travel and excremental). Some folks joke that such moments are a blessing from Mother Nature, but these days, such an incident doesn't feel like a blessing.

Mom's in about the same condition as she was yesterday, but slightly better: no fever, and both her heart rate and blood pressure are slightly down (though still elevated).

Sean tells me, based on his visit to the hospital, that there's a big decision coming up as to what to do with Mom. It's Dr. Berlin's firm belief that the longer Mom stays on the machines, the more likely she'll be permanently dependent on them. It may be possible to radically increase the aggressiveness of current treatments in order to make her transportable, but even then, it's not likely that Mom will ever breathe without a ventilator again. She came into the ER with respiratory failure, and that essential condition hasn't changed.

Along with the logistical problems of getting Mom back to Virginia, there's the problem of where to place her. If we opt for Fairfax Hospital's ER, we may have trouble securing a space. As David pointed out, the ER is there to help people and get them out, not babysit the dying for an indefinite period. We might also choose the hospice option, but we need to study up on what services, specifically, a hospice provides. 24-hour surveillance? An on-call doctor? Proper facilities for someone in Mom's condition?

In terms of allowing Mom the most peaceful passage, keeping her at home, with hospice care provided, would seem ideal. The problem here, though, is that every time she had an emergency, Mom would need to be whisked to an ER. We can imagine this happening with increasing frequency as the end comes nearer. How comfortable would she really be at home?

So-- a family discussion is in order. I'm off to see Mom now, after much delay. Luckily, my brothers have been good about relaying information. A text message from David at 2:30 said that the docs are performing a bronchoscopy on Mom, at last attempting to find out what's really going on inside her lungs. Dad, David, and the Texan contingent are all out in the waiting room, and I understand that Pastor Kim has made it up to New York as well.

Our thanks, as always, to all the people who continue to express concern, care, and love.


soon to be shorn

Attempt #2 at getting a haircut will begin in an hour or so. I've had a late morning; Dad and David went out with the Texan contingent to Cafe Luka for breakfast. Everyone reported that the food was generally good, though Dad seemed a bit disappointed that the portions weren't larger (compared with Luka's huge dinner portions).

Dad's over at the hospital, waiting to go in and see Mom. The Texans may be joining him. I'll be hitting the hospital later on, after I've had a second shower to rinse out whatever clippings might still be clinging to me.

Sean probably has to head back down to Virginia tomorrow to take care of some personal business; he'll be up in NYC again after a day or two. David is also a bit worried about staying away from work too long. He says he might have to arrange it such that he stays in New York only part of the week. Some of his work can be done remotely by computer, but a lot of it can't, he tells me.

We all may be moving out of this facility soon. The cost is becoming prohibitive. It's $225 per night (I had mistakenly said "$220" before), and about $35 per day for parking-- payment upon exit must be in cash. Dad's looking into military accommodations at a nearby base. No matter whether we go the military route or take people up on their offers of free lodging, we're going to end up farther away from the hospital, making it difficult for us to access Mom as freely as we currently can. (The solution might be to stay at the hospital from noon to 1AM, but then there's the question of how much we're inconveniencing our hosts when we come home late.)

Further complicating matters is that we really don't know how long Mom might remain in New York. Her condition is tenuously stable at best; she might veer off into either radical improvement or radical failure.

Pastor Jeri is helping us look into hospice options, and is also helping us look further into the future, toward funeral home options. As much as I've repeatedly emphasized the need for realism in dealing with this situation-- the need to stay focused and in touch with what's actually happening-- there are moments, these days, when I shake my head and say to myself: Damn. This isn't a dream.


Sunday, December 27, 2009


Mom's feverish right now, and the cause might be another infection, possibly from her central line-- one of several intravenous lines that have been attached to her for several days. As one doctor said, the chances that the central line might become a source of infection generally increase with time.

While we were in Mom's berth, the docs set about resolving the potential problem. They found prominent veins in Mom's ankles (Mom's hands and wrists are now too swollen for anyone to sink needles there) and installed two new IV lines, one in each ankle, thereby obviating the need for the central line. As we were leaving, the nurse began prepping to wash Mom, and the docs made ready to remove her central line. We hope this will help Mom's fever, but we're not even positive that the central line is indeed the cause of the current infection.

Apparently, Mom's other cultures came back negative for everything except MRSA. One doctor remarked that a negative doesn't necessarily mean that nothing had been going on: sometimes a negative result simply indicates that recently administered wide-spectrum antibiotics have done their job. The problem with such a situation is that, with the pathogen gone, no one will know what the pathogen was.

Mom's heart rate is way too high right now: around 140 beats per minute, which is almost twice her normal resting heart rate. Dad is extremely worried that Mom won't be able to sustain such a pace, and I agree. But no one seems quite sure why Mom is reacting the way she is right now. Are her elevated temperature, blood pressure, and heart rate due to infection, or to something else (e.g., something brain-related)?

We might know more tomorrow. Our general feeling is that we're dealing with the holiday/weekend crew, who might not be as on the ball as the regular staffers. In particular, we're displeased with the nurse taking care of Mom this evening. She's got some sort of attitude problem, and is sloppy-- bordering on slovenly-- in how she goes about her business. She heedlessly flops IV bags onto work surfaces, casts used items negligently on the floor and onto Mom's bed, and doesn't care whether the trash she tosses into the trash can has actually gotten into the trash can (several items ended up on the floor). David noted that the two doctors who came into Mom's room also obviously disliked this nurse, and that she disliked them. Wonderful. Office politics.

As Dad said to us later, in reference to the surly, sloppy nurse: "If you've got issues, keep them at home."

Uncle John and our cousins went with us to see Mom. The Texans went into Mom's berth first while David and I sat out in the waiting room down the hall. When it was our turn to go in, I noted how burning hot Mom's hands had become. Earlier in the day, I realized to my horror that merely holding Mom's hand was causing finger-shaped imprints to appear on her vulnerable skin. This evening, I avoided holding her hand, opting instead to place her hand so that it rested, warm but inert, on top of mine.

Mom remains dependent on her ventilator. Her eyes opened a few times while we were with her, but not in a way that clearly indicated consciousness. I have no idea what's going on in her head anymore, and can only hope that she's wrapped in a comforting fog, detached from the ugly reality of her situation. She now stands on the borderlands between life and death, and I wouldn't blame her if she quietly decided to hop over the fence to get a better peek at the flowers growing on the other side.

She deserves flowers. I never gave her enough of them.



It was an arduous bus ride up from DC to New York, but my Texan relatives-- Mom's little brother John and his two children, Matthew and Jenny (Ji-hyae)-- got here safely and are staying in a room two doors down from us. I served the group a mixture of quasi-Italian and Korean food: budae-jjigae and fettuccine Alfredo with chicken, portobello mushroom, and baby spinach. Both dishes seemed to go over well, and my cousins very kindly cleaned up the kitchenette.

We're off to see Mom now. Sean had departed a bit earlier; he's also going to meet some friends.


on tap for Sunday

My day's probably going to go something like this:

1. Go see Mom in the next few minutes.

2. Go shopping for ingredients to make budae-jjigae for the Texan relatives, as well as ingredients to make chicken fettuccine Alfredo (primarily for my brother David, who loves chicken and pasta).

3. Make the budae. If David wants it for dinner, make the chicken dish.

4. Greet (and possibly feed dinner to) the relatives, who will be staying at the Helmsley as well.

5. See Mom after dinner.

6. Go back to the hotel and start working on dessert (a Nigella-style mousse, but amped up, since we now have so much gift chocolate).

7. Eat dessert with whoever wants it, then go see Mom one final time before doing some blogging and hitting the hay.

Doesn't sound very exciting, does it? But there we are.


Saturday night for Mom

We visited Mom in the evening, from about 9PM to 11PM. There's nothing new to say about her condition; however, we did find out that she's receiving her new, petroleum-based eye drops every four hours, and is receiving her diuretic as needed, depending on urine output. She's still puffy, and we keep hoping that she'll be less swollen as time goes on. Her heart rate remains high, and her blood pressure is at the high end of normal. I'm worried that, even unconscious, Mom is experiencing a great deal of discomfort.

Most of our time with Mom was spent in silence around her bed. Dad gravitated to Mom's toes, saying that he was always the one to massage Mom's feet, and that she'd know he was there. We three boys took turns holding Mom's hands.

The nurse told us that she would give Mom a thorough cleaning and working-over as soon as we left, and we decided to leave at 11PM so as not to delay the process. Part of the cleaning procedure would involve suction, and as we'd already seen, the suctioning of Mom's airway caused her a great deal of pain. We wanted the unpleasantness over with sooner rather than later, so that she could sleep longer.

Everyone said their goodbyes on the way out of Mom's berth. I whispered that I would see her again tomorrow, and apologized yet again for not being able to do more for her.