Mom received another bundle of cards and gifts while she was in the hospital. As always, we are very thankful for the kindness that you, the senders and carers, have shown Mom.
Saturday, May 30, 2009
Mom has been home since 3:45 today. The paperwork to get her out of the hospital was endless, but I understand why it was important.
At around 7PM, Kelly from InfuScience, the company that's contracted to work with Fairfax Hospital, came to our home and set Mom up with her IV antibiotic solution Kelly's a nurse). Dad was the main student during this little workshop, and he'll be teaching the technique to me and to whoever else wants to learn. David was already at the house (he put up a very nice "Welcome Home!" sign for Mom), and Sean joined us after he'd gotten home from a musical gig.
A different nurse will be coming to our house this week-- three times this week, if I'm not mistaken. After that, the visits will be twice weekly. Mom has to dose twice per day, which means the onus is on us to see to Mom's dosages. The nurse will check Mom's PICC line, take her vitals, and check up on the healing of Mom's scalp-- which she'll be able to wash normally around Wednesday.
One of Mom's Korean friends now has "dibs" to visit Mom sometime tomorrow. She'll be arriving sometime in the afternoon. Yes, ladies: feel free to (1) call ahead at least a day in advance, and (2) bring Korean food, as I know Mom was jonesing for it while she was in the hospital, eating bland turkey in mysterious white sauce with overcooked broccoli on the side. Not the most exciting fare, even for people who can't eat spicy food.
So we're home. Mom's asleep in her own bed. She's got one of the IV bulbs attached to her PICC line right now, and Sean is monitoring her. David's off to work (he works a 9-5 job during the week, and also tends bar in the DC-Metro area; tonight, he'll be there until about 5AM or so). I've moved my computer from the downstairs to the upstairs to help in monitoring Mom. We're watching out for her.
We've been told that Mom's discharge paperwork is being looked over. She's definitely leaving today, and will be visited by the InfuScience nurse later this evening, around 7PM, so we can learn more about Mom's PICC line. More to come when Mom actually leaves the hospital; I'm in an "I'll believe it when I see it" frame of mind, given previous delays.
Friday, May 29, 2009
We began the day with high hopes that Mom would be leaving-- preferably in the morning. Well, the morning came and went, as did the afternoon... and by evening we knew that a Friday exodus from the hospital would be a lost cause.
We four guys lingered into the evening while Mom slept, curled up in a fetal position and lying on her right side-- the safe side. The neurosurgeons have declared Mom's stitches to be about as good as they're going to be, and while Mom's vitals are fine, one doctor (internal medicine) felt that she needed a transfusion to bump up her blood count as a way to give her more energy (more red cells = more oxygen) and to help her fight infection while back home.
We left Mom while she was sleeping. It was a little after 9PM; we felt bad for leaving her there all alone, only to wake up to a team of doctors and nurses, but we also knew that we would have to wake up early to be at the hospital early on Saturday morning. Once again, we were promised that Mom would be leaving. This evening, Mom is getting another IV infusion of vancomycin, after which the transfusion will occur. It's only a single unit of blood, and we've been told that this won't affect the potency of the vanco (as the staffers call it) in any way.
Mom will also be getting a walker and other equipment to aid her with this new and uncomfortable reality. Mom went for a tentative walk at least twice today, thanks to the help of some therapists. The trip was just to the bathroom and back, but it was nevertheless a milestone. She also had her helmet readjusted through the addition of more internal padding; the helmet had been moving around on her head, which had made Mom wince in pain.
Mom's home antibiotic kit was shipped to us this evening; the box of equipment was on our doorstep when Dad and I arrived back home around 10PM. The antibiotics themselves had to be refrigerated, so Dad quickly saw to that (the shipping package contained dry ice so that the product would remain safe while sitting outside in the warm weather). We had a mini-lecture on home care, but a medical professional will be visiting us tomorrow evening to explain more fully what needs to be done regarding the care and maintenance of Mom's PICC line. We'll be responsible for flushing it twice daily, and will also be administering her meds in most cases, as the nurse won't be dropping by every single day. The company providing the nurse and the meds is a private firm contracted to work with the hospital. The whole thing is very complicated; I don't envy Dad the amount of paperwork involved in all this.
The day began somewhat vexatiously: the morning nurse wasn't even aware that Mom had had a PICC line put in, and had tried to use the IV still stuck in her right hand-- an IV that had come loose and no longer worked. When I informed the nurse of why Mom had the PICC line, and how long she was supposed to have it, the response was a quizzical look that told me all I needed to know: there had been a breakdown in communication between the ICU and the non-intensive wing. The nurse was, basically, flying blind.
This sort of breakdown isn't the first we've encountered; last weekend, the ER mistakenly listed Mom as having been housed at a rehab center-- an astoundingly insane bit of misinformation whose origin remains unknown (Dad suspects that someone pulled the wrong patient's records, a hypothesis that makes sense to me). Doctors' names are routinely mispronounced and misspelled, which gives us a devil of a time in trying to figure out who's who. Nurses who check Mom's vitals don't always update the wall-hanging white board unless we, the family members, mention the need for an update-- an oversight that can affect the work of staffers who must tend Mom after the previous shift has ended.
As I think I mentioned a few weeks ago, it's primarily up to the family circle to make sure that medical staffers know everything that's happening. If the family sits back passively and allows the hospital to do its own thing, the results can be dangerous, as we nearly discovered for ourselves during Mom's first stint at the hospital. This isn't bitterness or cynicism talking; I'm sure the health care professionals are all well-intended and doing their best, and I don't resent them at all. But the ball is frequently dropped in ponderous bureaucracies, so no family should assume that their loved one will receive perfect care, even when the doctors say, "Don't worry; we'll take great care of her." What that statement really means is that they'll try, but the reality is that they'll need your help, and you'll need to be both persistent and thorough.
Overall, though, Mom's level of care at Fairfax Hospital has been good-- far better than the somewhat slow-witted level of care she received at Mount Vernon. Just yesterday, MV Hospital got back to us to say that, based on the bacterial culture results from last weekend, Mom might need further treatment. Dad shook his head in wonder upon hearing this. MV Hospital obviously didn't know that we (1) had already taken Mom post haste to Fairfax at the behest of a Fairfax-based doctor's advice last week, (2) had had her undergo surgery, and (3) had gotten her onto a rigorous antibiotics regime. Hats off to Fairfax Hospital for calling us so quickly last week. MV, meanwhile, needs to clean up its act.
Anyway, we're assuming that Mom will indeed be coming home on Saturday. She'll spend eight weeks in the house, vulnerable as a newborn thanks to her missing bone flap, undergoing IV antibiotic treatment (as well as resuming the consumption of her pre-therapy meds) and receiving periodic visits from a physical therapist.
Mom's 24/7 care will be provided mostly by Dad and me, since we're home all the time. For eight weeks, one of us will always be at her side, as she is too weak and uncoordinated to walk a straight line unaided. She will have to wear her helmet every time she wants to go anywhere, no matter how short the distance. Because Mom's blood pressure still drops radically when she either stands or sits upright, we will always have be on on the alert for the possibility that she might trip or otherwise collapse.
I don't mention any of this because I chafe at the upcoming duty and commitment. Quite the contrary: I welcome it. If I had the power to take this disease into myself, to let it gnaw at me instead of my mother, I would use that power unhesitatingly. Unfortunately, that's not a burden I can assume. All that I-- we-- can do, instead, is be there for Mom. And you know what? Being on call 24/7 seems a minuscule burden in comparison to what Mom is going through. All of us in this family bear it gladly. How could we not?
Mom might or might not be coming home today. Just a few minutes ago, we heard that she's been scheduled for a transfusion due to a low blood count. So we're stuck not knowing whether Mom will be staying the night. A doctor is going to come at some point ("at some point" is about all I can say; it's impossible to get a straight answer from anyone regarding specific times) and talk to us about the transfusion; I imagine we'll know more later.
This new turn of events is, as you can imagine, somewhat frustrating.
UPDATE, 7:40PM: The transfusion still hasn't taken place, and it's a 3-4-hour process. After that, Mom's supposed to get another 2-hour drip of vancomycin (which Dad keeps pronouncing "vanco-MY-a-cin"). All signs point to Mom's being in the hospital yet another night. While this is a burden to Mom, it gives us an extra day to prep the house, and to do an extra-careful job of disinfection.
Dad and I are at the hospital. Mom's doing about as well as she'd been doing yesterday. She was talking when we came in; now, she's drifting off for a nap (yes, we're that boring). A nurse is about to step in and look Mom over. We still don't know what time she'll be out of the hospital.
UPDATE: Her antibiotic drip is in. It's supposed to go on for two hours. Mom's probably not leaving before 2PM. Considering how erratic the doctors' schedules are, there's no telling when the discharge will happen. Stay tuned.
Thursday, May 28, 2009
[NB: This post has been updated. Please scroll to its end.]
Sean was with Mom from about 9:15AM to 2:30PM. David came by during the lunch hour, sacrificing his own lunch hour to drive from his job in DC to Fairfax Hospital, then back to DC again. I arrived around 10:50AM, just in time to see two therapists getting ready to depart. They had tried to get Mom to walk around, but they told me that she wasn't ready yet: she was still too dizzy, and her legs were too weak for proper walking.
Mom was, however, sitting in one of her ICU room's chairs, which was a welcome sight. She looked very awake and interacted with us in a much more lively manner than she had yesterday. She had her helmet on; I know it made her feel ridiculous, but it's there for her protection.
I said hi to Mom, stayed with her a few minutes, then hit lunch with Sean, who told me he'd been disturbed by the sight of Mom's scalp when her bandages were being changed. Later in the day, I saw Mom's scalp for myself; it wasn't as bad as I'd thought it would be, and two doctors assured us that things were as normal as could be expected, given the circumstances.
Pastor Kim came by as well, and after David and Sean had left, Dad arrived sometime around 5:45PM. He'd had to stay behind to work on chores and errands-- paperwork doesn't cease just because someone has cancer. Mom's good friend Theresa Lindow, a nurse at the hospital, also very kindly stopped by when her shift was done. She held Mom's left hand a while, noting, as Sean and I had, that Mom tends to grip people's fingers and squeeze them. Whether this is purposive or random, I don't know, but Mrs. Lindow jokingly asked Mom if she was trying to send her a message in Morse code. That produced a weak smile.
Mom's vitals are still good and stable, though there was some question in the morning about the level of her antibiotics. After her feat with the chair, Mom was eventually returned to the bed with the help of a very kind and capable nurse who tells me she hails from Bulgaria, but who spent a few years in Belgium. No, she doesn't speak French-- I checked. She says she and her husband lived in the Flemish region.
We don't know when Mom will leave the ICU, but we do know that she'll be having her intracranial drain removed today. Her synthetic bone won't be placed under her scalp until the course of antibiotics is completely done, which means we've got 8 weeks. Mom will eventually come home-- with her PIC line still in her arm-- and will be visited routinely by hospital staffers who will (1) tend to her antibiotic regimen, and (2) engage her in more physical therapy. It's a long road ahead.
UPDATE: Mom was moved-- finally-- to the non-intensive wing around 8:20PM. This is her final night in the hospital: she's slated to be discharged tomorrow. Before she is discharged, it's very likely that we family members will be schooled in the maintenance of Mom's PICC line, which is in her left arm and threaded to a blood vessel close to her heart. As mentioned above, she will also be receiving visits from hospital staffers who will tend to the PICC line and see to her physical therapy. Mom's convalescence will require us to watch over her 24/7, because she is still missing her bone flap (her intracranial drain was taken out somewhere between 7 and 8PM, when visitors were not allowed in the ICU). She'll be bringing her new helmet home with her; we've been told we may decorate it as we please.
Mom is still in the ICU, as of a phone call by Dad earlier this morning. Sean is at the hospital now, and I'm on my way over. Dad is staying behind at home to work on home-related things, but he'll drive up in the other car later in the day.
The major news is that it's almost definite that Mom's drain will be removed today. Worried about further seepage and intracranial pressure, Dad asked the staffers whether removing the drain would be safe, and they said yes.
Wednesday, May 27, 2009
We left Mom a little after 9PM. She's still in the ICU due to a lack of available beds in the non-intensive section. Mom is no longer considered an ICU patient, however: her vitals are stable (though her respiration rate is high-- about 22-25 breaths per minute), the drainage from her cranium is slowing down, and she no longer needs an IV through which to receive nutrition-- she eats on her own, though she's still too weak to cut her own food. Her "regular" docs (i.e., not the ICU docs) are looking after her now, though we didn't see any of those docs today.
Mom is still very sleepy, and though it's possible to talk with her, her responses are very brief. She also hasn't shaken off her rattling, phlegmy cough, which Dad labels a URI (upper respiratory infection). In addition, Mom is often in pain from the surgery; she sometimes tries pushing at the bandages on her head, which are once again being held in place by a "stocking cap," a gauzy, white, cap-shaped net with a knot on top; it fits over the bandages, hugging them to her skull.
Mom's appetite seems to have returned, at least somewhat; she doesn't finish her meals, but she eats most of what's there. When we ask her how the food tastes, her response tends to be a noncommittal, wordless nod-and-bobble: edible, but so-so.
I remain worried that Mom's hands still tremble, and I wonder at her cognitive state, which seems at times to be little different from what it was a month ago. As a test, I asked her to describe how to make bibim-bap, a very common and very popular Korean rice-and-vegetable dish. I had to prompt Mom rather frequently; when she tried to respond to my question, it didn't occur to her to begin by listing bibim-bap's ingredients. By the time we got around to the actual cooking process, Mom's attention had drifted away from her own discourse, and she ended up staring silently at the TV. I didn't prod her any further. Part of me felt she simply didn't want to continue the mental exercise: this was her way of telling me to quit pushing her.
We're not sure how much longer Mom will be in the hospital. No one has definite answers, mainly because a lot depends on how well the antibiotic regimen is working. We guys-- Dad, David, Sean, and I-- are negotiating some sort of visitation schedule so that we don't all spend enormous blocks of time at the hospital. While being with Mom is never tiresome, it is tiring. The ICU very specifically does not want visitors to get too comfortable, and this is reflected in its no-sleeping policy, its two-visitors-only rule, and the hardness of some of the chairs inside the patient's rooms. When Mom initially came to Fairfax Hospital back in April, Dad spent the night with her in the ICU. I have no idea how he managed such a feat, given how uncomfortable such a night would have been. Love conquers all, I guess.
On the way home, I asked Dad what he thought about telling Mom's friends to come visit her in the ICU, since visits are allowed 21.5 hours out of the day. Sensing the stress of the ICU staff, which has to monitor and control the flow of visitors, Dad said that such visits might not be a good idea right now. I can see what he means: there might be a crowd of people who, because of the two-at-a-time rule, would stand around waiting for long periods to visit Mom. This wouldn't be convenient for anybody.
So I'm sorry to report that, for the moment, visits are probably not a good idea (a special exception would be the pastors, who've already come by more than once). If and when Mom is moved to the non-intensive section (there's a chance she might be discharged directly home), I'll be sure to announce this fact on the blog, and you'll be able to visit her.
It's almost 3PM as I write this. Mom remains in the ICU, and is being tended to by a team of nurses. There's been no word yet as to when she'll be moving to the non-intensive section.
Mom's bandages seem to have shifted since yesterday; she wears them higher on her head. Sean got to hospital first, and he found out that this development isn't as worrisome as it might seem. Mom's temperature is slightly higher than it was yesterday, but her vital signs remain good and stable. Her lips are also less chapped today, ever since Dad helped Mom apply lip balm yesterday. She's sleepy, and we're guessing that she depressed, as well as frustrated at finding herself once again back in the hospital. I don't blame her.
David stopped by to visit Mom during the lunch hour, taking a bit of time off work to do so. He's gone back to work now; Sean is still here along with Dad and me. Dad's current mission is to find out whether the Radiology Department will still allow us to get those free parking passes, even though radiotherapy will be delayed for some time.
A few moments ago, Pastor Kim walked by and greeted Sean and me while we were sitting out in the main lobby. He's gone up to see Mom, and Sean and I are about to go up there as well (probably breaking the 2-visitors-only rule in the process).
There are quite a few high-quality English-language blogs devoted to North Korea and NK-related geopolitics. Two that come to mind right away are One Free Korea and DPRK Studies. Joshua of OFK has written yet another excellent post, this time about NK's current saber-rattling which is, as always, a cry for attention from the global community, from whom it extorts food, fuel, technology, and money. Go read Joshua's "And in Other News, The Korean War is On Again."
Mom is still in the ICU as of this morning; she's been listed for a bed, and she'll have one when one is freed up for her. I'll be sure to tell you the moment she is transferred to the non-intensive section of the Neuroscience wing.
I know that many of you are impatient to visit Mom. She'll appreciate the visits. Please keep in mind, however, that unlike the ICU, which allows visits all day and night (except for two small blocks of time during which the doctors make their rounds), the non-intensive section does have visiting hours-- until about 8PM, if I recall correctly. Please plan accordingly.
I wish we had this marvelous biotechnology in mass production right now:
Tumor-killing replicating viruses are a hot topic in the biotherapeutics arena, with many clinical trials ongoing worldwide. That Professor Seymour's group set out to and has now defined a mechanism whereby wild type virus potency could be maintained in tumor cells but the virus could be 'turned off' in tissues vulnerable to pathology adds important information to the current base of knowledge.
"This approach is surprisingly effective and quite versatile. It could find a range of applications in controlling the activity of therapeutic viruses, both for cancer research and also to engineer a new generation of conditionally-replicating vaccines, where the vaccine pathogen is disabled in its primary sites of toxicity," Professor Seymour says.
Tuesday, May 26, 2009
A special thank-you goes out to Mr. Bill Keezer, who recently purchased a copy of my book on religion, Water from a Skull (see the sidebar for information about this book, which is self-published through the publish-on-demand service called CafePress). Some find the book dense, some find it technical, some find it debatable or even objectionable. Others have told me it's fascinating, engaging, and very readable.
I don't feel too bad about plugging the book here, because there's not even a snowball's chance in hell that such a work will make me rich. I'd need to sell thousands of copies per month for that to happen, so it's with no shame that I say: Buy the book. Financially speaking, you won't be helping me a bit.
We're home now, as of 10:00PM.
Dad and I had a slow morning, though Dad got up much earlier than I did and accomplished much more. He ran errands and gassed up the car at Fort Belvoir, where prices are far cheaper than off-base. I woke up at the crack of 10AM, after only six hours' sleep. Not long after, while I was still groggy, I heard the loud beep of my BlackBerry: a text message. The message was from Sean, who was wondering whether we were at the hospital yet.
As things turned out, Sean arrived at the hospital first, sometime between noon and 1PM. Dad and I arrived around 1:45 and found Sean and Mom in the ICU. Because Mom is again on infection protocol, we gowned and gloved up before going inside. I noticed a tray of solid food sitting outside Mom's ICU room; once inside, I saw another tray of food-- either it was breakfast, or lunch. This second tray of food was all liquid or near-liquid: broth, coffee, gelatin, etc. I assumed that there had been some confusion about what sort of food Mom should be eating. Later, we discovered that Mom was supposed to have the solid food, though we never learned whether the liquid food was a botched lunch or the remains of breakfast.
Sean was sitting with Mom, holding her hand. Mom turned out to be awake and responsive, though still groggy, slow, and prone to wincing in pain from the sensations in her head. Her cranium was wrapped up, still Q-tip style, with a sort of white, knotted sock-like net over the bandages to hold the dressings together. As was true last night, Mom responded well to touch, squeezing our fingers and wiggling her toes. by the time dinner rolled around, though, I noticed that Mom's hands seemed to be trembling. As I watched her eat, I further noticed that some of her previous coordination issues had returned: she occasionally stabbed at her food with exaggerated force, and had to slow herself down in order to guide her fork to her mouth. The problem wasn't nearly as bad as it had been several weeks ago, but it was there. I assume this is because Mom's surgery once again involved her brain.
Mom wears a drain that leads out of her head, collecting any excess fluid that might be forming inside the cranium. The drain was essentially a thin tube that ran out of her bandages and past her left shoulder, culminating in a little squeeze bulb where the fluid collected. One nurse told us that the fluid wasn't analyzed, but it was measured: ideally, Mom should be producing less and less of it over time.
Mom had her PIC line put in (the hospital uses the other acronym, "PICC," peripherally inserted central catheter), had a CT scan done, and had some X-rays taken. The PIC line now allows Mom to receive IV fluids through this one port, and the port can also be used for drawing blood. This saves Mom the pain of being stuck repeatedly when having multiple IVs attached to her. She'll keep the PIC line for 6-8 weeks; much of the time, she'll be receiving vancomycin, an antibiotic, through the IV. We family members will probably learn a great deal about the care and maintenance of the PICC line over the next few days, but when Mom finally comes home again, a hospital staffer will be visiting us every day (or every other day) to check up on Mom's status.
As for the big picture: we're hearing that the replacement of Mom's bone flap-- i.e., the piece of skull that had been removed during surgery-- will take around two weeks. The CT scan she'd had earlier in the day was done to allow the makers of the synthetic bone to know in what shape to craft the new flap.
Mom will therefore be as vulnerable as a baby during those two weeks. A large section of her head is currently covered only by skin, like a gaping fontanel. For this reason, Mom will be required to wear a special helmet whenever she needs to move around. Sometime in the afternoon, a lady came into the ICU and matched Mom up to a helmet-- one that's larger than normal in order to accommodate Mom's bandages. The fitting process was hard to watch, as it caused Mom a great deal of pain. Because the white, sock-like net on her head had a large knot on its top, the net had to be removed to allow the fitting to occur. Although the lady was as gentle as she could be, Mom was in obvious agony from the gentle pressure of the helmet's interior on the sides of her skull. Once the sizing and adjustments had been completed, however, Mom felt better.
Pastor Jeri stopped by in the afternoon and talked with us a bit. Mom was initially asleep, but she woke up for a bit. The pastor asked to see my new hairdo, which I obligingly revealed to her. Pastor Jeri is also a police chaplain, and she remarked that I now look a bit like some of the police offers she's seen. I hypothesized that baldness made the officers more aerodynamic when chasing down perps on foot. Pastor Jeri prayed with Mom, then left. She's off to Cleveland for a few days, and I wish her safe travels.
I didn't have to mention to Mom that I'd shaved my head: she saw that fact right away, when I first came into the room. I made a show of ripping off my bandanna to expose my bald pate, and Mom was caught somewhere between instinctive disgust and laughter-- a common situation between us, as I've never exactly been "couth" around her. I placed my palms together, assumed a pious expression, and did a jokey version of the "Amitabul" chant* from Pure Land Buddhism, which made Mom chuckle.
Sean left around 4PM, and David popped up around 6:20PM; he sat with Mom a few minutes, and then he, Dad, and I went off to dinner. We ate at the hospital's decent but uninspiring basement cafeteria, and got back to the ICU's front door around 7:40. We weren't allowed to go back in: doctors' rounds are from 7PM to 8PM in the evenings. We loitered in a waiting room down the hall; David trained his cell phone on my head and mercilessly took pictures of it. I assume these will be used for blackmail later.
When 8 o'clock rolled around, Dad and David sat with Mom while I grabbed my laptop, went to my traditional quiet spot elsewhere in the complex, and tried to answer some emails. Sean came back to the hospital around 8:30PM. Some time later, Dad called me and told me that Mom was shooing us all away, and that I should come back and say my goodbyes. I had intended to hang with Mom a little more, but she's become very good at shooing people away, including family members. We all left the hospital sometime after 9PM, and some of us will be back there again tomorrow morning.
*Amitabha is the Buddha of the Western Paradise in Pure Land Buddhism. This Buddha is called "Amida-butsu" in Japanese and "Amita-bul" in Korean (butsu/bul = Buddha). The basic idea behind Pure Land Buddhism is, as one of my professors joked, "salvation by grace through faith": one relies on Amitabul to save one by calling on his name. This doesn't assure one of nirvana, but does grant one access, through rebirth, to the Western Paradise (Sukhavati, Land of Bliss, the Pure Land), where one can then meditate undisturbed until nirvana is achieved. There isn't much organized Pure Land Buddhism, per se, in Korea, but Pure Land tropes are prevalent in much of Korean Buddhism.
Dad called the hospital this morning and learned that Mom was fine, but still groggy. I'll be whipping up lunch for the two of us; Dad is currently out doing some errands. Sean texted that he'll be visiting Mom in the hospital after he finishes some errands of his own. Yesterday, David had promised to visit Mom "tomorrow," so I imagine he'll be seeing her after he's done with work this evening. I was up until 4AM answering emails after shaving my head (which took a while, despite the new electric clippers) and doing my laundry.
We're all taking it slow today, I think.
Monday, May 25, 2009
Around 6:40 this evening, we saw Mom in the recovery room, lying on her gurney, wrapped in blankets, pressure cuffs on her calves, her eyes closed, her body mostly still. Mom's scalp was again wrapped up in another white turban, much as it was on April 21, the night of her first operation. Tonight, however, Mom was far more reactive, post-surgery, than she had been last month, despite the fact that tonight's procedure was almost as invasive as the debulking procedure had been. The nurse in charge of Mom, who noted how quietly we three sons were standing around Mom's bed, told us to talk to her: Mom wasn't exactly asleep, and she could hear and understand what we were saying.
So I loudly told Mom she looked like a Q-tip.
The nurse talked about why anesthetized patients don't get solid food right away: the anesthetic tends to slow peristalsis, making it difficult for a patient to process whatever food she consumes. Without peristalsis to move the food through the digestive tract, a person can suffer from blockages and other problems. The nurse said that the normal procedure was to start the patient on bits of crushed ice, then to move her, slowly, back up to normal solid food. All the while, the doctors and nurses would be monitoring the patient's vital signs and listening to bowel sounds, including gas, to determine whether the patient was ready to move on to the next type of food.
So I loudly told Mom, in English and Korean, that it'd be good to hear her fart again.
Yes, of course that was in poor taste, but transgressive humor is my particular talent. You have no idea how well-behaved I've been on this blog, especially since April 16.
Dad had gone in to see Mom first; David and Sean stood by Mom's bed, touching her hands and talking with her. Sean jokingly told Mom that she had to get better because he needed a haircut (Mom has traditionally been the family's barber). David commanded Mom with exaggerated sternness not to touch her head. Both brothers showered her with love.
And Mom was indeed responsive, just as the nurse had said she would be. She squeezed our hands in reaction to what we were saying, which included tiresome commands like "Squeeze my fingers"-- commands that Mom had heard all day long before the operation; they had been issued by a parade of doctors and nurses checking neurological responses.
I had been holding Mom's left hand for a while; when I beckoned Sean to take over, I moved to the foot of Mom's bed and asked her to wiggle her feet as I gripped them. Her reaction was weak, but distinct: she wiggled each respective foot in response to my requests.
Mom's skull is currently missing a rather large polygon of bone-- the infected bone that had to be removed, and which will, if I understand correctly, be replaced by synthetic bone. This new "bone" will be crafted according to CT scans of Mom's head, and will be fitted into place like a puzzle piece at a later date (I'm unclear as to when). The Q-tip turban hides the crater under her skin, and also hides her new set of stitches or staples. I was mistaken, by the way: her first set of staples did not penetrate her skull; they were purely for her skin.
Mom will be in this vulnerable state for a while-- at least a week, probably longer. The hospital will be monitoring her very closely, taking great pains to make sure she eventually becomes totally free of infection. Even after Mom comes back home, she will be visited either daily or every other day by someone from the hospital, whose job will be to monitor Mom's status as well as her PIC line, which will be in place for 6-8 weeks.
Meanwhile, we've been given to understand that more of Mom's hair has been shaven off, and that it might not grow back in the area of scalp that will cover the future synthetic bone. I can only imagine what this is going to do to Mom's self-esteem, so tonight, I'm finally taking the plunge and shaving off all my hair. Assuming I do this well, I'll post a photo of my chrome-dome soon.
It promises to be a liberating experience, being bald: for one thing, my dad will be happy. He has unpleasant memories of my sophomore year in college, when my hair was down to my shoulders in a pitiful attempt to emulate the Mel Gibson "Lethal Weapon" look. Ever seen long, half-Korean hair on a fat half-Korean before? The overall effect is far from Mel Gibson but uncomfortably close to that of chunky rock star Meat Loaf.
So Dad will, at long last, see my scalp worthy of his old-school "high and tight" military standards, and I'll be free of this stifling mane of hair that I'm currently sporting. I've been hiding the hair under a bandanna, but the net effect is an overheated scalp, especially in this warm, humid Virginia weather. Better to shave the whole thing off and enjoy the cool breezes. The bandanna will still be a fixture, but now I'll be able to cinch it tighter to my skull. That, or I can buy a gray monk's robe and pretend to be a Korean Buddhist monk-- or a ddaeng-joong, a fallen monk. (NB: Very few Buddhist monks are plump. Sure, there are exceptions, but I've met a lot of monks and visited a lot of temples in Korea, and I can attest that most of these people are thin, thin, thin. In other words, I'd never pass for a real monk.)
Eventually, the time came for us to leave. Mom needed rest, and there was little more that we could have done for her in her current state. We each said our goodbyes to Mom after hanging with her for the better part of an hour. She weakly squeezed our hands and even managed a sort of good-bye wave, gently batting the fingers of her left hand against her mattress, as we called out our final good-byes and I-love-yous and sleep-wells. I had the impression that Mom was, despite this awful travail, in better spirits than she had been before the operation, when she was mostly sullen and resigned.
We guys-- Dad plus his three sons-- went out to dinner at a Silver Diner close to the hospital, then went our separate ways. For Dad, the day had been especially stressful. While we had all been taken aback by the discovery that Mom's infection had been so extensive, Dad in particular took the news hard. In seeing Mom's disposition in the recovery room, though, Dad's spirits lifted considerably. When Dad and I got home-- after having spent over 13 hours in the hospital-- Dad went down a list of names of people to call: relatives and friends. He didn't manage to reach everybody (and we apologize for having awakened one gentleman with a 9:45PM call), but he got most of the people on the list. Right now, Dad's asleep after a thoroughly draining day.
We hope that those of you who insist on calling our home and leaving multiple messages (I'm speaking more of friends than of relatives) will understand that, because we have to stay at Fairfax Hospital for lengthy periods, or because we have to shuttle back and forth between home and the hospital, we cannot possibly respond in an absolutely timely manner to your many messages. We appreciate your understanding, and hope you will be patient with us, not frustrated. In the meantime, please get your updates by reading the blog. The blog, now that it's been repurposed since April 16, is a courtesy extended to people who want to know how Mom is doing. Its purpose is not only to inform, but to reduce phone and email traffic.
I also encourage you to leave your reactions in the form of comments to these blog posts. Leaving a comment isn't difficult; just click on the "comments" link at the bottom of any post, select which type of commenter you are,* write a comment in the comment window, then hit the "Publish Your Comment" button. Your comment will not appear immediately: I have to screen all comments in order to weed out anything rude or otherwise offensive. You would be well advised to read my comments policy, which can be found by clicking the link on my blog's right-hand sidebar, below the picture of me. One other suggestion: if you are worried about your own privacy, please do not leave your address or phone number or other contact information in the comments. All such information will be visible to the public.
OK... it's now 11:50PM, I've got laundry to do and a head to shave. I hope your Memorial Day weekend went well, and that you took some time to honor those who risked their lives to protect and defend our country.
*Listing yourself as "Anonymous" is OK, but please leave your name at the bottom of your comment. This is consistent with my comments policy, which requires people not to comment anonymously. Using a screen name or nickname is fine; see my comments policy for details on why this is permissible.
Dr. Leiphart, the neurosurgeon who led the team that did Mom's surgery on April 21, came out at 5:20 to tell us how today's surgery went.
The infection had spread further than anyone realized, passing through the skull and through the dura mater, entering the brain and proliferating in the cavity where the main part of the tumor had been removed. The surgeons also had to take care of the scalp problem, as the incision had become jagged because of the infection and scabbing. Re-closing Mom's scalp therefore meant stitching it together "under tension," as the doctor put it. If it turns out that the current closure is too tight, it may become necessary to bring in a plastic surgeon to find a better way to close the skin.
We won't be able to see Mom for another hour. She'll be under close watch, not merely to guard against any physical problems, but also to keep tabs on her mental state, which may have been affected by the infection and this second surgical foray into Mom's brain.
As a result, we no longer know how long Mom will be in the hospital, and we're hearing that her PIC line (for antibiotics) might be in for 6-8 weeks, not 4-6 weeks. On the bright side, it's likely that Mom will be able to resume therapy despite the presence of the PIC line.
Mom will have a "drain" attached to her skull for the next little while. The docs are watching out for brain swelling, and balancing that concern with the need to fight any recurrence of infection.
It's doubtful that Mom is in any shape to receive visitors, especially right now. I'll be sure to let everyone know when she's once again ready to meet the public.
UPDATE (9:58PM): Mom has been moved from the recovery room to the Neuroscience ICU. She's one room away from the room she was in when she first arrived on April 16.
Mom was moved from pre-op to surgery about ten minutes ago (roughly 2:50PM). We've been told that the procedure, which is likely to involve the removal of some bone from Mom's skull, will take an hour or two. A lot depends on the extent of the infection that the doctors find. If it's discovered that the infection hasn't reached the bone, then the removal won't be necessary. If, however, a removal is necessary, then the bone will either stay out a few days and be re-placed in the skull, or it will be replaced by synthetic bone. Different doctors told us different things about this procedure; I'll have a more exact description for you later.
No matter what the docs find, Mom will remain at the hospital another five or so days. Her first day will be spent in the ICU; after that, it's likely that she'll be moved to a non-intensive ward. Mom will also be fitted with a special type of IV called a "PIC line." This is a long-term IV line that is more stable, and feeds into a larger vein both to aid in the introduction of fluids and to facilitate the removal of blood samples. The PIC line is also necessary so that Mom can go home: she'll be attached to an IV setup for 4 to 6 weeks, receiving antibiotics. We still need to determine what this will mean for Mom's radio- and chemotherapy, but one doctor (of the ten or so docs who visited Mom today) conjectured that she might still be able to undergo therapy despite the IV, but only after her reopened incision had healed sufficiently.
And that's about where things stand right now. Once Mom's procedure is done, the first thing we'll want to know is whether bone had to be removed. We were told that this was highly likely. Because Mom will have to spend some time without bone over that part of her brain, she will be given a special helmet to wear for when she's walking around.
Mom spent yesterday and today lying in her hospital bed, either sleeping or staring at her sons or staring straight ahead with a resigned look on her face. She still retained some sense of playfulness, though: when the time drew near for Mom to be taken out of pre-op to surgery, Sean placed his hand near hers, but instead of holding Sean's hand, Mom pinched the tip of Sean's index finger between her thumb and forefinger and gently shook it. She smiled while she did this, making me wonder just who was reassuring whom.
Mom is scheduled for surgery today. It's not even 8AM (we've been at the hospital since 6:30AM), and Mom has already been visited by two nurses and two doctors, all of whom give her the same cognitive, strength, and sensation/coordination tests.
The news hasn't changed since yesterday: the docs have looked at the scans and cultures; they've seen that there's an infection going on (Mom's on IV antibiotics), but they're unsure of its extent and won't know more until they've reopened the first surgical incision.
Dr. Kerr, who was the assistant neurosurgeon during Mom's tumor-debulking operation, told us this morning that the surgeons are "at the mercy of the OR," because the hospital is receiving trauma cases that are, understandably, assigned a higher priority than Mom's infection.
More news later. For now, we wait. Sean's on his way over; David will be by in the afternoon. Mom will continue to receive hourly visits from nurses, and we'll probably see another doctor right before Mom is taken to surgery.
We're hoping the docs discover nothing more than a superficial infection. Keep those fingers crossed.
Sunday, May 24, 2009
[NB: This post has been updated. Scroll to its end.]
Mom's going to be admitted overnight to Fairfax Hospital. She is apparently one of a small set of people who become more susceptible to infection while taking Decadron, a steroid to reduce swelling. Mom's been on a step-down regimen of Decadron since her April 21 surgery. She was, in fact, supposed to be off the drug completely within a day or so.
Dad will be staying overnight at the hospital. I'll probably be returning home, but will stay at least until we know what room Mom will be placed in.
The docs plan on doing a thorough scouring (debriding, i.e., the removal of dead and foreign matter from a wound) of Mom's scalp. Dad is also looking to get a more thorough set of instructions regarding Mom's incision care.
Dad tells us that Mom is currently sleeping. She probably needs the rest, given the discomfort she's in.
UPDATE: Mom has been moved back to where she was barely a month ago: the Neuroscience wing. She's not in the ICU, but will probably be moved there after surgery tomorrow. In other words, tonight won't be her only night back at the hospital.
The type of surgery Mom gets will depend on what the docs determine about the extent of her infection. If the infection is found to have gone as deep as the bone, it's possible that the strip of skull under Mom's surgical scar will have to be removed and replaced with artificial bone. At this point, we really don't know.
Mom's incision will undergo thorough debriding and drainage to get rid of the scabs and pus. This essentially puts Mom back at square one with regard to wound healing, and her chemo- and radiotherapy will have to be postponed. What all this means as far as the big picture is concerned, I don't know.
UPDATE 2: After Mom was moved from the ER to the Neuroscience wing, Sean came by, and we all spent time with Mom. Dad and I elected to go home for the evening after being at the hospital all day. Mom spent the day fading in and out of sleep, sometimes falling asleep in mid-sentence. We (Dad, Sean, and I) have to get up at 5AM and be at the hospital in time to intercept the surgeons who will be working on Mom.
UPDATE 3: Many thanks to Pastor Jeri for buying dinner for our family; feeding a bunch of large guys isn't cheap, nor is it cheap to drive around town when gas prices are on the rise. I do hope the good pastor didn't pay out of pocket for this. (Then again, I can imagine our church's Admin Council having a fit if the money for this meal were coming out of the church's budget!) We didn't have a chance to eat until Dad and I got home around 10PM (Sean left the hospital with us and drove to his home in DC), but the food was still fine.
Mom still hasn't improved much since yesterday. This morning, we got a call from Fairfax Hospital saying that she needs to come in for further examination. This need has been based on bacterial culture results from Mom's visit to Mount Vernon Hospital yesterday.
We'll be leaving the house around 10:30AM. More later, as this develops.
UPDATE: The nurse allowed only Dad to accompany Mom into the exam room, so I'm outside in the waiting room and my brother David is on the way.