Wednesday, June 17, 2009

PICC line issues

Two home health nurses visited us at 11AM. They got Mom's history, redid her wound dressings... and noticed that Mom's PICC line wasn't letting anything through it, a fact Dad had discovered last night when attempting to give Mom her first infusion of daptomycin. Mom will have to have the PICC either flushed out or replaced. In either case, this will mean driving Mom back to Fairfax Hospital in the next few minutes. In the case of PICC replacement, I'm hoping this will be an outpatient procedure.

As a result of this latest development, the remaining visits by various health care professionals are being cancelled (as is Dad's dental appointment, which is now rescheduled for tomorrow).

We leave as soon as Mom finishes lunch.

Just FYI, Mom slept well last night and is about as talkative today as she was yesterday. She's trying hard to walk on her own, but the effort tires her out quickly, and her balance is fairly shot: even when she's sitting down, she tends to list to one side.

She'll definitely need a wheelchair once she reaches the ER today.

More updates by BlackBerry likely.


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Tuesday, June 16, 2009

back to the home

Mrs. Faircloth, the lady who spent some time in the bed next to Mom's, was taken away-- still quite weak and bedridden-- in the early afternoon, a few hours before Mom's own discharge. A nurse confirmed that she was being taken back to her nursing home. I can only hope the poor woman doesn't fall again: I saw the terrible bruising all up and down on her right forearm, and felt a pang for her.

I never did confirm the identity of the gentleman who visited her during the second and third days of her time in the hospital, but I'm pretty sure this man was her son. He and I exchanged cordial nods on two occasions. He seemed friendly enough-- not as withdrawn as I can be. I was glad he was there for Mrs. Faircloth. I wish them both well.


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dressing

We're home barely an hour, and Mom has already stripped off the protective dressing from the back of her left thigh, exposing the glistening rectangle of skin from which the graft had been harvested. Yes, I said "skin" and not "flesh": her leg doesn't look nearly as bad as we had thought it would. Somehow, in my Stephen King-fueled imagination, I saw that wound as a horror of exposed muscle. It wasn't. The layer of skin that got stripped off was very, very thin, and the raw rectangle on Mom's leg, while vulnerable to infection, isn't a bloody mess by any means. We can all relax about that, at least.

Sean and I went through the laborious procedure of re-dressing the site, during which time Mom had to lie on her side in bed. Mom got fully into bed when we finished, and talked with Sean. The fact that she's able to have mini-conversations now is heartening.

SEAN: Mom, you didn't even say hi to me when I came by today!

MOM (giving Sean her sincerest doe eyes): I was gone!

Indeed, Mom had been asleep while Sean was at her side, and Mom's "I was gone" indicated that she had figured this out.

None of this is to say that Mom is chatting away fluently. Her ability to converse comes and goes; we're still dealing with cognitive and memory impairment (she temporarily forgot that Dad had been with her all day today), and probably will be for the long term. Any improvement, however ephemeral, is something to hail.

In other news: while Mom was asleep, Dr. Wolk's proxy came by and told us that now would be a good time to begin facing the grim realities of Mom's GBM prognosis-- to be thinking about and discussing whether we want the professionals to use "heroic measures" should Mom suffer heart failure or other extreme problems during the end stage of her cancer. Infection, the doc said, is the way that most GBM patients die. The doc also gently suggested that Mom needed to be involved in this discussion while she was still in possession of some measure of her mental faculties. I agreed, but with a heavy heart: it's still not obvious to me that Mom fully understands her own situation.

Dad, ever hopeful, brought up the patient in the room next door-- a wife who is five years past a GBM diagnosis. Dad had spent time talking with the woman's husband outside in the hallway, and I suspect he's latching on to whatever silver lining he can find.

But the brute reality is this: our hopes are bounded by the statistical and biological realities of Mom's situation. The woman next door is in the lucky 4% who survive 5 years or more beyond their diagnosis. It's perfectly rational to hope for my own mother to be in that select group as well, especially at this early stage, but it's not rational to avoid planning for probable outcomes. A great deal of human misery results from a refusal to face things as they are; we, as a family, all need to be on board about what the future likely holds for us. Whatever hope we may each hold must be leavened with pragmatism, and that would be true even if cancer weren't in the picture.

But this isn't to say we should be joyless and mopey. If anything, Mom's prognosis highlights the fact that life is a gossamer, fleeting thing, and that as a result, every moment counts, and every second is maximally precious. So each time Mom smiles is a treasure. Each step she takes on her own is a gift. Each remembered event, each laugh, each successfully navigated conversation, is a benison, another memory to treasure.

Mom is alive. We have her now. But we can't hold on to her, any more than we can hold on to anyone or anything else. Jae beop gong sang: all phenomena have the character of emptiness. All things are here, and all things are passing. Accepting this is important-- not to deny or suppress the grief to come, but to make it easier to handle, and to return us always to a proper experience of this moment.


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home (again)

Today marks Mom 15th day at the hospital. She was discharged around 4PM, and was out by the main entrance, waiting in her wheelchair, at 4:30PM. We just got home, having avoided the worst of the rush-hour traffic.

Much to do tonight and in the coming days: doctor appointments to arrange, home care nurse and physical therapist visits to deal with, and more meds and equipment to buy. Please hold off on visits until Mom is again properly settled in.

And as always, PLEASE call at least 24 hours before visiting. At this point, frazzled as we are, this guideline is no longer only for Mom's peace of mind, but for all of us. Thanks in advance for your cooperation.


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imminent freedom?

According to David, who came to the hospital last night, Mom was decatheterized. I also noticed that Mom's cranial drain has been removed. These are good things, but Mom now needs to call a nurse to help her walk to the bathroom.

A few minutes ago, Dad mentioned that Dr. Wolk will be back to see us. We plan to ask him about the wisdom of discharging Mom today. Much depends on his answers: if he feels Mom's anemia, low blood count, and low potassium aren't problematic, and that Mom's lack of mobility isn't a major issue, then we might consent to taking Mom home. If we still have a bad feeling about all this after hearing the facts, we'll insist on keeping Mom here until she's truly stable.

As of 11:30AM, Mom is once again sleeping. Earlier, she sampled some food given to her by Mrs. Quigg-- two types of Korean soup plus rice.

Mom was somewhat talkative when she saw us come in at 10:30. I was happy to see this. Mrs. Walters apparently left Mom a card, but the card seems to have disappeared. Mom insisted that the card was "here," but when I asked her to show it to me, she lapsed into silence.

11:40AM: Mom's about to get her head and leg dressings changed. More later.


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Monday, June 15, 2009

Mike turns 40

Before the day is done, I need to offer a public HAPPY 40th BIRTHDAY! to my best buddy Mike, whom I've known since the third grade. Historian, raconteur, bon vivant, and family man (the last two items probably produce a certain amount of static), Mike blogs at Naked Villainy, where he wears his special brand of conservatism on his sleeve, dubbing himself the Maximum Leader and blogging in the self-parodic third person.

Like me, Mike's a bookworm. His pet subjects are history, politics, and philosophy, but he's happy to engage in discussions on just about anything: sports, cooking, religion, whisky, etc. Want to get on Mike's good side? Ply him with scotch and praise William Churchill. If you happen to be hiding some Cuban cigars in your contraband locker, share one with Mike and your passage into heaven-- well, his version of heaven, which might resemble a cosmic Hooters-- is assured.

Mike and I have scarily similar temperaments, but frequently divergent tastes. Such similarity and contrast are what make our friendship work, I think. My own leanings are more toward science, religion, and philosophy; Mike gravitates toward history, politics, and philosophy. When cooking, I'm more of a slice-it-up person; Mike is more chunky-style in approach. Mike likes watching team sports such as hockey and football; I'd rather watch individual sports like singles tennis and boxing (and the occasional Ultimate Fighting tournament). Both of us are fans of "Battlestar Galactica," and both of us came away from the series finale with very mixed feelings (my long essay on the theology of BSG is here).

Mike is also a proud husband and father of three: two lovely daughters and one squirming, wriggling, energetic son. I'm sure Mike would be the first to say that no family ever achieves perfect harmony or fulfillment, but I'd counter that perfection is what we see in and through the imperfect. Mike's children-- the eldest of whom is my goddaughter-- faithfully reflect their parents' values in their own thoughts, words, and deeds. Mike has turned out to be a fantastic father, and he did well to marry a woman who so perfectly complements him, truly meriting the term "better half."

On June 15, 1969, my best friend was born, and my life has been richer for it.

Happy birthday, bro.


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wanting to avoid a repeat performance

We're going to lobby for Mom to remain in hospital a little longer. The more I thought about it throughout the day, the more uneasy I felt about allowing Mom to be discharged in the next 24-36 hours. If infection was the problem before, then how is releasing her now a better solution? Her potassium level is down, she's anemic, and her blood counts are low (I'm no medical professional, so it's possible these are all interrelated and/or overlapping problems). Signs point to immunodepression-- precisely the sort of scenario that can invite MRSA back into Mom's skull. I also harbor a suspicion that although Mom initially caught MRSA in the ICU when she arrived there on the evening of April 16, her time at home after the first operation wasn't helpful, either. Perhaps we could have done something more to promote hygiene-- stopped her from picking at her scalp, washed her more frequently and more thoroughly-- something. Home isn't necessarily any safer than the hospital.

We want to avoid making mistakes this time around, given how important it is that Mom's various incisions and wounds heal. Without healing, she can't resume therapy. Without therapy, there's no hope of fighting the tumor, a goodly percentage of which (roughly 10-20%) was never removed.

More on this tomorrow.

ADDENDUM: It's my understanding that the Walters came by to see Mom today. Dad, Sean, and I had already left, and David might not have arrived by the time the Walters came by, but I thank them for taking the time and making the effort to visit, even though we didn't have the chance to meet.


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leaving as of 4:35

We're leaving the hospital now to get some housecleaning done. It's possible that Mom may be home as early as tomorrow, though we're going to see about keeping her longer.


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Sent via BlackBerry by AT&T

perhaps not so abject after all

The lady in the bed next to Mom, who I now know is the 80-something Mrs. Faircloth, was visited several times on Monday by a gentleman who I assume is her son. I'm glad someone was there for her throughout the day.


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many visits

Well, well, well-- quite the cavalcade of visitors today! Alas, in their excitement to see Mom, people have been forgetting that they should call us 24 hours in advance... but Mom doesn't seem to mind, and that's all that matters. It's barely noon, and Mom has already seen quite a few people. (NB: dropping in suddenly isn't a big deal, mainly because we're in the hospital. In other words, we don't have to tidy up the house every time someone wants to drop by. That will be different once Mom's back home, as Mom herself is easily stressed by unannounced visits to her home.)

1. Around 10:25AM, Dad and I saw Dr. Mirali, the plastic surgeon. He says that, at least as far as Mom's scalp goes, she's ready for discharge from the hospital as of today. Obviously, Mom will remain in hospital a while longer, as we're still monitoring her for infections and other possible post-operative sequelae. Dr. Mirali saw Mom's helmet, which we had brought in for his inspection, and pronounced it good to use on Mom's head, even though the fit might be snug with the additional dressings. Overall, he's happy with Mom's progress.

2. Around 11AM, we had three people show up: Pastor Kim and his wife, and a certain Dr. Butler, who works with Dr. Meister, the medical oncologist managing Mom's Temodar regimen. You'll recall that Mom is currently off therapy because she's dealing with infection issues, but the oncologists have to remain in the loop: Mom needs to resume therapy as soon as possible.

Dr. Butler confirmed that the cross-hemispheric material was from the tumor. He also noted the presence of cancer around the edges of the cavity where the debulking occurred on April 21. He noted that this was perfectly normal: lack of cancer in that area would have been strange. We have nothing to worry about in terms of sudden metastases in the brain, spinal cord, or the rest of the body: gliomas apparently prefer to remain in the brain; their aggressiveness articulates itself in a slow, steady, insidious way, unlike other cancers that infiltrate large volumes of tissue within the space of a week.

The oncologists promise to coordinate with the other docs to get the timing right for the restart of Mom's radio- and chemotherapy. It'll be at leas another few weeks.

3. A second couple, Mrs. Whitaker-Frevert and her husband Mr. Frevert, came by, bringing Mom a vase of flowers and a wig. Mom was fascinated by the latter, which she took out of the resealable bag and inspected. Mrs. Whitaker-Frevert did a fine job of talking to Mom. As with Mom's other Korean friends, Mrs. Whitaker-Frevert was very encouraging and supportive.

4. Dr. Yoho, the infectious disease specialist, dropped by initially to see Mom's roommate (who I now know is surnamed Faircloth), but spent some time talking with us. Mom is on an antibiotic called Zyvox, but there's a chance she might be switched back to daptomycin when she's discharged.

It's my understanding that more people are on the way-- one couple will be arriving in a few minutes, and another is coming this evening. It's possible that Pastor Jeri will also put in an appearance, but Pastor Kim had mentioned, several days ago, that he and Pastor Jeri have been alternating visits.

Mom is much more awake and verbal today, though still nowhere near capable of extended, fluent conversation. She was also nauseous between visits (a possible result of the antibiotic Zyvox, according to Dr. Yoho), but a nurse gave her some anti-nausea medication through her PICC line. We were told that Mom had been spitting up after breakfast this morning; when she tried taking the fragment of a potassium pill in our presence around 11:40, she managed to keep the pill down, but regurgitated into a plastic basin that Dad got under her chin in time.

Mom is being changed by the nurses right now; she's no longer nauseous. I'm out in the main lobby, writing up this blog entry and waiting for Dad to call me back up so we can feed Mom her lunch. Pastor Kim and his wife had brought some Korean food, and I had brought along a serving of Mrs. Kopf's seaweed soup. Mom ought to have plenty for lunch, but I do worry about whether she'll be able to keep it all down.

UPDATE: Dad forgot to call me back up to help Mom with lunch; he's been feeding her. I'm on my way up now, though it's possible that lunch is now over.

UPDATE 2: We've had more visits, this time from Mr. and Mrs. Harding, more of Mom's friends. The Hardings brought various gifts, including some Korean bakery items. Upon seeing the food, it occurred to me that bringing individually wrapped consumables was a great idea. One of the main problems with bringing food to the hospital is that Mom might not always be able to eat everything, and once she's done, the leftovers have to be thrown out: no one else may eat them, and the food may not exit the room due to the MRSA isolation protocol. The nice thing about small, not-so-perishable items is that they can be saved until the next meal.

A speech pathologist also wanted to come in to see Mom, but apparently decided to wait. She hasn't come back. Three more doctors came by: Dr. Leiphart came in to check on Mom and was happy to see her more talkative. Dr. Wolk of internal medicine, who was pretty frank about Mom's prognosis (we told him we were aware of the survival rates for GBM patients), and Dr. Bresner, a neurologist who had come in to check on whether Mom's nausea might be brain-related.

The upshot is that Mom's potassium level is low, and her blood count is somewhat depressed. She's anemic, too, which makes me wonder why the docs think she can be discharged in a day or two. I'd rather have her stay in the hospital until she's as stable as can be.

Dr. Wolk noted that, because Mom's tumor will only worsen over time, it's necessary to think seriously about things like wheelchair access for the house so that she can be wheeled to and from the car on her trips to the hospital.

ADDENDUM: I hope people don't find my first paragraph too brusque or rude. I didn't write it in a spirit of resentment, but as a reminder that we really do prefer some sort of advance notice before people come to see Mom. She's easily tired out by too many visits, and Dad and I need the chance to coordinate things by putting the visits down on a calendar. As I noted earlier, this will be even more true when Mom is back home. Please respect the 24-hour guideline. Thanks in advance.


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forgot to mention

The plastic surgeon, Dr. Mirali, came by around 11AM or so (Sunday), checked and changed Mom's head dressings, and looked over Mom's leg dressing. I had the chance to look at Mom's scalp, which is now completely bald except for a few random tufts and wisps of gray hair. At long last, she and I finally look like escapees from a Korean Buddhist temple, and while I'm tempted to take a photo of us both in our shorn state, I know that such a move would horrify Mom, who still has some sense of dignity, even if I lost mine years ago.

My point is that I had the chance to see Mom's scalp for myself, and I'm happy to report that her primary incision-- the one that was the gateway to all of Mom's most recent problems-- looks a thousand times better than it did when Mom came in on June 2. The incision itself, now sewn together with much less tension and cleared of the bloody, infected mess that had been there, looks the way a post-surgical wound should look: clean, clear, and straight.

Later on Sunday, Mom had two more visitors: Mrs. Jemma Bishop, and Pastor Jeri. I stepped away with Sean to sit and relax in the cafeteria; based on the remains of Mom's dinner tray, I gather she ate both Western and Korean food for dinner, though I didn't look closely enough at the leftovers to see what sort of appetite Mom had displayed.

Many thanks to all of Mom's visitors this weekend: Mike, Pastor Jeri, Cheong Burns, Mrs. Kopf, Mrs. Quigg, and Mrs. Bishop. I hope the visits continue; Mom needs as much mental stimulation as people are willing to give her. No one can force her to talk, but by constantly exposing her to speech in a convivial environment, it may be possible to rouse her own desire to participate in whatever discussion is going on.


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Sunday, June 14, 2009

the lady in the next bed over

Whoever Mom's roommate is, she's the picture of abject misery-- sunken cheeks, wispy white hair, and a shrunken, brittle form, looking for all the world as if she were approaching her final days. Not a single visitor came to see her the entire time I was at the hospital. I have no idea whether the poor woman can even talk, though I know she can moan and cough. My brother David overheard that the woman had been living in a nursing home and had fallen, which is what had brought her to Fairfax Hospital. Like Mom, this woman is MRSA-positive. We know this because only MRSA-positive patients can be berthed next to Mom who, upon entering her current room, assured that the room would be subject to an isolation protocol.

While I hate to give my church's pastors more work, I'm hoping they might take a few minutes to sit with this woman. In the time I saw her, she was either lying in bed with her eyes closed or was staring sadly off into space. Time and again people have commented on how much of a support group my mother has, but today, we saw no one come to be with this lonely creature-- no one other than the nurses who periodically cared for her.

Might this woman reject attempts at contact or interaction? Would she respond positively to a warm hand? I don't know; I haven't tried it myself, though I might try tomorrow if no one shows up to see her. What a horrible way to spend the gloaming of one's life-- alone in a hospital, bereft even of the most basic human warmth born of well-cultivated relationships.

I hope I'm wrong: I hope that she has visitors, lots of visitors, tomorrow.


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"Think about your husband and children!"

Today, Mom seems a bit less talkative, but about the same as yesterday: awake, alert, and even able to feed herself (though she didn't mind getting help at lunch).

My buddy Mike came by and regaled us with stories from his life as a husband and father; he turns 40 tomorrow, being among the first in my circle of friends to do so (my turn comes in late August). After we had fed Mom, we-- that is to say, Dad, Mike, and I-- drove down the street to The Four Sisters, a Vietnamese restaurant that had been recommended to us by Sean. For once, this was our treat for Mike: Mike has already treated us two or three times to dinners at Sweetwater Tavern, a family dining spot that features good food, but isn't exactly cheap. Dad and I thought Mike might enjoy a lunchtime birthday treat; it was the least we could do for my buddy since third grade.

The Four Sisters proved not to be cheap, either, but the food was delicious and very reasonably priced. The service, though a bit harried, was prompt and error-free. I, for one, enjoyed my spicy chicken and ginger. I think Mike liked his seafood combo and Dad enjoyed his sesame chicken. How Vietnamese any of this was is anybody's guess. Dishes change when they enter a foreign culture, sometimes to the point that visiting natives can't recognize them. Case in point: when you order spaghetti at an "Italian" restaurant in Korea, you'll get a little bowl of sweet pickles on the side-- a fresh, crunchy substitute for the normally ubiquitous kimchi. Korean pizza might include ingredients like corn and bulgogi. The list of conversions and perversions is long, and it wouldn't surprise me to learn that most of the "Vietnamese" menu at The Four Sisters isn't really Vietnamese.

Mike left after lunch to go home to his family and grill flounder for dinner. When Dad and I walked back into the hospital's main lobby, we saw that two of Mom's Korean friends had arrived: Mrs. Kopf and Mrs. Quigg. They bought Mom balloons and a bouquet of hospital-safe silk flowers; when we got to Mom's room, they showed Mom that they had also brought along some Korean food, which Mom will have for dinner.

Mom now has a roommate, a MRSA-positive grandmother with a deep, rattling cough. She didn't have any visitors at the time she was brought into the room; I can only hope that someone will come see her before visiting hours are over. She looked sad and alone.

Because of the new roommate, and because Mom was initially asleep when we gowned up and walked in, we all had to talk in hushed tones. Dad and I updated Mom's friends on her condition; I sensed sadness and optimism emanating from the two ladies.

Perhaps as a way of cheering Mom up after she had awakened, Mrs. Quigg asked Mom if she would be up to assuming the role of president of the local Korean-American women's society again. She also told Mom to get better: "Think about your husband and children! They need you! You know you want to cook for them!" Mom nodded assent.

Upon hearing this, I found myself recalling a scene from Juzo Itami's movie "Tampopo," in which a dying wife is commanded by her husband to make dinner for him and the kids. The scene doesn't really fit the cheerful tone of the rest of the movie, and is instead a window into poignancy: the wife, deathly ill, shakily pushes herself to her feet and proceeds to make a meal for the husband and her children. She manages to sit at table with them, and holds herself up long enough to see that everyone is eating heartily. With a weak smile on her face, the woman slumps sideways to the floor and dies. The tearful husband commands his children to keep eating: it's the last meal their mother would ever make.

Why would the husband make such a demand of a woman so near death? I suspect it was an appeal to the wife's love and her sense of duty. The husband wasn't trying to be cruel; like anyone else, he wanted to see the love of his life move about-- act alive-- just a little bit longer. What's more, the wife wanted to show her love and devotion to her family. Such a scene might seem foreign to us non-Japanese, but it follows a comprehensible emotional logic.

The husband's behavior doesn't qualify as "tenderness" by Western standards. Similarly, some might interpret Mrs. Quigg's words to my mother as overly harsh or demanding: how could Mom possibly serve as the women's society president, or even expect to cook for her family, months or even years from now? Mom's got an incurable brain tumor, after all. But I'm sure Mrs. Quigg was appealing to Mom's own sense of love and devotion, providing Mom with simple reasons to go on living. She did this in a Korean way, but her intentions were benign.

Mom was a bit quieter today than she was yesterday. This may have been because she was content to listen to Mike and to her Korean friends. Perhaps it was enough for her to let the pleasing sounds of conversation wash over her; perhaps it was enough for her simply to nod "yes" when she was directly addressed. Conversation is something we can hope for later. It can't be forced out of her; she'll heal on her own time.

Both of Mom's friends are eager to help out by bringing Korean food to the hospital. As long as food deliveries are timed to coincide with Mom's mealtimes, this won't be a problem. The problem arises when food is left to sit in Mom's room for several hours: there's no place to refrigerate it.

I'm in my usual aerie right now (the cardiac telemetry waiting room), and just learned via text message that a third Korean friend, Mrs. Bishop, has arrived to see Mom. Many thanks to her as well for visiting. I suppose I should head back to Mom's room.


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she sleeps

Dad and I arrived at 10:10 today. Mom's been sleeping, her head dressings once again making her look like one of Santa's elves. The nurse said that Mom ate breakfast and was talkative before.

My buddy Mike is on his way over. Things are quiet.


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Mom gets an "A": brief notes before I sleep

Mom's Saturday was eventful and momentous.

1. Mom sat in a chair twice, the first time thanks to the help of a physical therapist in the morning.

2. Mom was more verbal than she's been, often making sentence-length utterances. She has a long way to go, though, as she's still fighting aphasia and is often unresponsive to questions posed directly to her.

3. Cheong Burns came to visit, very kindly bringing Korean food for Mom and a wad of cash for us guys to use for meals. Mrs. Burns fed Mom lunch and talked with her, even staying a while to watch over Mom after she had fallen asleep in the afternoon.

4. Mom insisted on walking to the bathroom, and despite a shaky start, she made the round trip under her own power as we walked alongside her, ready to catch her if she collapsed. Her knees, though wobbly, never once let her fall. We're very proud of Mom for this.

5. Pastor Jeri arrived in time to see Mom eating dinner, which she ate ravenously (Mom, that is, not Pastor Jeri). When Pastor Jeri said "I love you" to Mom, she replied very clearly, "I love you, too."

6. David came by in the early afternoon and stayed until 6PM or so. He prepped Mom's dinner, then had to leave, but we were all witness to the extraordinary fact that Mom took her fork and began actively feeding herself.

7. We were all disappointed that the plastic surgeon didn't come by to look at and redo Mom's head dressing. We were told that he might come by during the night or the following day (i.e., Sunday). The nurses put on a temporary dressing for Mom's leg to prevent to much seepage, and Mom got pain meds throughout the day to ease the discomfort of all those bandages and punctures up and down her poor body. Her endurance is something to behold.

I also need to add two notes of thanks-- first to Mom's friend and NALC coworker, Donna Brandes, who gave us some excellently made moussaka. Secondly, we need to thank the Bennetts (fellow congregants) for their scrumptious lasagna, salad, and brownies. And as always, we're thankful for the cards and the many other kindnesses that have come our way. We're fortunate-- and humbled-- to have so much support.


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Saturday, June 13, 2009

eating while sitting up

Mom was visited by a physical therapist this morning. The therapist got Mom not only to sit up (she required some support from Dad), but also to sit in a chair next to the bed. This was great, but in the process of moving Mom off the bed, the dressing covering the back of her stripped thigh began to peel off and hang loose. This was worrisome, but Mom seemed to enjoy being in the chair, and Dad notified the nurses about Mom's dressing situation.

Mom's close friend Cheong Burns came over around 12:20, with Korean food. The fragrance alone was a delight to my senses, so I can imagine how happy Mom was to have something other than bland hospital food to eat. Mrs. Burns has been wanting to visit Mom for a while, so Dad and I helped her set up Mom's lunch so that Mrs. Burns could be the one to feed Mom while talking with her. Mom is lucky to have so many good friends, and I applaud Mrs. Burns for the businesslike way in which she approached the problem of feeding Mom. Some people freak out or otherwise lose their composure in such situations, perhaps overwhelmed by the gravity of a friend's cancer, or by the sight of that friend in such a reduced state, but Mrs. Burns seemed perfectly fine. Good. Mom needs stoicism and cheer, not pity or weeping.

Mom is also much more verbal today, sometimes producing short bursts of complete sentences, but her utterances remain mostly spontaneous, i.e., she's not talking all the time, as if talking were a routine occurrence for her. For example, when the physical therapist would ask Mom simple yes/no or "wh-" questions like "Are you hurting?" or "Where does it hurt?", Mom would reply, "Um..." and then lapse into silence, all while giving us the impression that she actually had something to say. The therapist said she was familiar with such behavior, so this wasn't a problem for her.

The therapist was gone by the time Mrs. Burns arrived, and Dad and I left for lunch soon after. We brought boxed lunches today, though Dad did sneak off to buy a brick of chocolate-covered ice cream-- sort of a low-rent Klondike bar-- that cost an astonishing $3.25. Well, not that astonishing: the cafeteria isn't shy about its pricing, a fact with which we've become painfully familiar.

Mom will eventually have to get back into bed so that her dressings can be tended to. For the moment, the dressings cover her thigh wound, but Mom tends to shift her leg and sometimes tries picking at the dressing itself. I imagine it's very uncomfortable; I'd probably pick at such a dressing, too.

I'm off in a relatively quiet waiting room-- my aerie on the third floor of the cardiac building, where they do cardiac telemetry. David is on his way over here; Sean is very busy today with lessons or gigs or who knows what, but I'm sure he'll be by when he has the time. He was here almost all day yesterday; that much free time is a rarity for him, as it is for most professional musicians.

My troisième frère Mike is thinking about coming by the hospital tomorrow. Things are about as good as they can be.


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questions and notes

We arrived at 10AM, the beginning of visiting hours, but the nurse told us she's bathing Mom, so we're down the hall and waiting for the ablutions to end. Meanwhile, here are some notes I took yesterday as part of a family discussion. We have these discussions constantly, mainly as a way to figure out how far we've come and where we have yet to go. I'm leaving the notes here for you to read, but also for our own benefit.




1. Docs: please guide us through the specific chronology of the tumor's and/or infection's spread. Specifically, what crossed from one hemisphere to the other? Tumor? Infection? Both? What caused the swelling? Was it an edema? Was it the infection?

2. Get head dressings from the plastic surgeon for Mom. Ask where available.

3. Where is the drain bulb draining from? Brain? Scalp? Both?

4. General question: what happens next for Mom's care?

5. Docs: how soon do you all expect to meet re: resumption of therapy?

6. How soon will the plastic surgeon know that the scalp skin is actually healing, and isn't too irradiated?

7. To Dr. Yoho: is it possible to have a reaction to Zyvox similar to vanco? (Possible red man syndrome-type effects?)

8. Mom's hygiene: what's the most hygienic home care possible? (Hospital standard of care)

MRI = one week to 10 days from June 10 operation.

In four weeks = radio & chemotherapy

June 13 = plastic surgeon changes dressings

Zyvox treatment = 2X/day; no more dapto

Get bedside commode

Shower chair! (Commode converts to chair?)

Anti-slip surface for shower


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Friday, June 12, 2009

moving

Mom is being moved out of ICU to the third floor non-intensive section. I should also note that the nurses say it's now fine for Mom to eat non-hospital food. As always, MRSA protocol applies, and visiting hours are until 8PM.

I think Mom likes the change of scenery when different people come to see her; she's more awake and reactive than she has been for days, and seems to work harder at moving and speaking when non-family members are around. With her family, she's quieter, perhaps feeling less need to be verbal with us.

My feeling is that, if the presence of visitors obliges Mom to adopt her "public" persona for their benefit, then she should see a bunch of visitors. As always, please check with Dad or me 24 hours in advance, especially if you're planning to bring food. I'd also recommend that you not bring too much food, as this causes storage problems. Please bring only enough for one meal-- one serving only.

Checking with us in advance and telling us whether you plan to bring food will allow us to coordinate among visitors, so that five people don't show up at the same time with food. Please try to keep the saltiness level down. (This hasn't been a problem, but it is an FYI.)

Once food enters Mom's room, it is considered contaminated and can't come back out. That's another reason not to bring too much food: it can be easily wasted through a simple violation of the MRSA protocol.

Thanks!


UPDATE: Mom's now in Room 354-2.

UPDATE 2, 6:38PM: Mom has shown a bit more movement in her right hand. Twice, she laced her fingers together in a single smooth motion. Just five minutes ago, she appeared to be in some pain. We requested some meds. As of 6:41, no one has shown up.


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"Oh, my goodness!"

Mom's awake and at least as active as when she had been brought back in on June 2. I fed her most of her lunch, and because I had to step out to answer some Medicare questions, a nurse came in and fed Mom some apple sauce.

Patricia Weldon (a nurse, and the daughter of one of Mom's Korean friends) stopped by and offered to buy me a drink and get something for Mom. We settled on ice cream. When Patricia brought it in, Mom exclaimed, "Oh, my goodness!" twice in a clear voice. She still doesn't speak in sentences, and often ignores or otherwise fails to respond to yes/no questions, but she's obviously improved since yesterday.

Mom's got an itchy nose, and she's tried to use both hands to scratch it. The fact that her right arm is moving is heartening, but she still doesn't move the fingers of her right hand.

The nurse told Sean and Dad that Mom is likely to be moved out of the ICU today. We don't know when.

And that's it for the moment. Dad and Sean saw Mom first; I got to the ICU around 12:45 and fed Mom her lunch. David will be by later today.


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slower

With Mom in the ICU and in need of serious healing time, I'm slacking a bit and waiting to leave for the hospital after rush hour has died down. Last night, Dad had mentioned wanting to be at the hospital around 8:30AM, i.e., when the doctors' rounds had finished, but he's still here, apparently waiting for me. I told him to go on ahead: we've got two cars, after all, and thanks to Pastor Jeri and her Tuesday Bible class, we've got another two weeks of free parking (thanks, all, for purchasing those vouchers).

More updates when I'm on site.


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