Friday, 25 November 2011

Home Therapy

When Miranda was discharged Thursday Nov 24 she was neurologically only slightly better than a month ago. She is still unable to recognize her friends, uncommunicative and bed-bound, although she has moved significantly out of the vegetative state, by being more wakeful. Actually she has hardly turned the corner neurologically. It is hoped that 2 months of home care will help improve awareness and provide the vital link to more active rehab - a consistent sensible response to external stimuli.
Strauss and Pi (2000-2011)
Friday Nov 25 9.30am: She had insomnia - for six hours after taking the drug madopar at 6pm she had the opposite problem in the ward - sleeplessness. But otherwise she had settled comfortably home, the dogs tentatively smelling her. She had begun to sweat under the covers again, not being able to move them. This weekend's experience will enable me to resolve some comfort problems when the home nurse comes next week.
12 noon: Based on what we learn from the PT, managed to give her a hot shower and wheeled her around the house, for as long as the BP holds.

Go on Miranda, you can do it!!

Saturday Nov 26 12 noon: She had her first home visitors, but not after a soothing hot-bath at home surroundings. Looks like we are getting better at it as caregivers. Visitors tell me that she looks very relaxed and comfortable. The dogs get to give her therapy one at a time, but she slept on throughout their barks.
Therapy - dogs in queue, (CW)Princess
Skipper, Goldie, Acer and (Front) Gerry

Sunday Nov 27 9.30am: Lost my voice after week-long attack of persistent cough. So if visiting, please send me an SMS. She has shown a little interest when I bring the dogs to her - she looked intently at them. We have to stimulate her interest in the surroundings in enabling recognition. So she sat on a wheelchair, briefly in the sun today BP ok. Finally sat 4 hours. She seemed normal, relaxed, both her eyes focused.

Monday Nov 28 4pm: Managed to sit her on the wheelchair from 11 am to 3.45pm - the longest ever. But she slept through the visits of MGS alumni, MegC as well as former boss CT. Started to sneeze more frequently, excising fluid, which is a good sign? I am still jittery about suctioning her throat secretions. Vertical tolerance is good, but when will she shed her drowsiness is a neurological question.

For what are we better than sheep or goats,
If knowing God, lift not hands of prayers,
Both for ourselves and for them we call friends?
                                       RL Stevenson - The Holy Grail

Tuesday Nov 29 3pm: Got a shock this morning when I saw skin irritations around her stoma bag - the nurse-maid did not fully followed instructions to treat the skin before each change. Must make sure procedures learned from the nurses are followed. She's been opening her eyes wide at 8.30, 10 and 11 in the mornings. Now just before her feed a moment ago she was there - waiting for visitors? Noticed that the visitation schedules are not happening, as some might have thought that it only applies for the hospital. If you need to change the schedules, just submit a comment at the page on Visitation Schedule. We will sit her on the wheelchair this evening, when it is less wet from the thunderous showers. But at 6pm her BP fell from a high of 150 to about 94 after we sat her on the tilt wheelchair. Not a good day for vertical tolerance. Back to bed!

Faculty, ChemEng, NUS 1984, bonding with freshmen and sophomores, at our home in Chip Bee Gdns

Wednesday Nov 30 10.30am: Could not get her to shower today as my gout-pained leg cannot carry her. Maybe later, after the Home-visit PT sees her. She was ready for visitors with opened eyes when KP and CP(of A*Star) came, her boss. Then the MGS girls. Also noticed her stools are getting firmer and darker - a good sign of better peristalsis? PT came and corrected nurse-maid's physio again, as well as transfer. Learned more steps and sat her on wheelchair till 7.30 pm.

Thursday Dec 1 9am: The  home nurse came and corrected the nurse-maid's stoma bag management, as well as bathing techniques. Also taught her how to organize her feeding and bed-management. These she has been taught but again need reinforcement. Little details such as choice of bedding sheets and feeding tube care are easily forgotten. Although her muscle tone has improved (even the calves), her neurological condition has remained stagnant - uncommunicative, unresponsive during the wakeful hours. Chairman (her boss) had suggested a more active neuro-rehab regime with computer and robot interface - something which TTS hospital could have pushed for. This I will explore. At 4pm attempts to sit her up failed BP again - just like Tuesday.

Friday Dec 2 8pm: Nothing happened in the morning - not even visitors, as she snoozed through, even in the shower. But she passed the wheelchair test today, sitting for 4 hours. As she sat in the patio, her eyes looking darkly ahead it occurred to me that caring for her at home is like sailing through uncharted waters. Anything could happen and I have no doctors around. First there was the pale-yellowish skin around the stoma area. Fortunately the home nurse eased my mind, saying it is just some bruising by repeated pulling off the sticker at each change. Then the gurgling sound which disappeared when she was somehow able to swallow the secretion. Then today the look of anguish on her face, as if she was about to suffocate. An attempt to suction her removed little secretions and she fell back to sleep, leaving me mystified. So as I sat alongside her, I started a one-sided conversation about all these scares, telling her how helpless I was when she looked to be in difficulty, where I would not even be able to tell the doctor on the phone what her problem was. After a while the conversation became a soliloquy and I too fell asleep, my mosquito-watch duty neglected.

Masters (cum laud) at University College, London ?(1973)

Saturday Dec 3 10.30am:  The crowd came. But not before we managed to put her on the wheelchair comfortably, getting some morning sunshine, her visitors surrounding her. Her feet got a little edemic from hanging vertically. She however had good vertical tolerance, sitting from 10.30 to 2.30pm. But today she is niggardly about wakefulness, preferring to snore in contention. Could the damage to her thalamus be so extensive that she continues to not recognize anything for 3 months? In one disastrous stroke turned a top scientist into a zombie.

Sunday Dec 4 5pm: Have less time to update the blog at home. Busy since her 10 am shower, because one maid took leave. She slept through it to lunch when she was propped onto the wheelchair at 11.30 - then sat for 4 hours facing the garden, eyes closed. When the visitors came she hardly opened her eyes, but when they all left at 3.40pm she was wide awake for an hour on bed! Discovered her looking at the ceiling in the dark (the sky was darkened with rain). But it was on schedule - 4pm. Maybe that is a bad time for visitors, but good time for her!

Monday Dec 5 10am: Found out first thing in the morning that she had kicked her right foot at the edge of the bed into a large blister. Isn't the maid supposed to turn her every 2 hours? Maid didn't know till morning.  But at least she is kicking - albeit involuntary. There is another thing I've found by accident. She keeps her wakeful moments longer lying down than on the wheelchair. Tradeoff between wakefulness and vertical tolerance. It is now noon - time to feed, rest one hour and then wheelchair or shower. Her MGS friends massaged her limbs while Sis worked on her hands. And she snored on the wheelchair. Sat 4 hours. Around 8pm her doctor friends LC and M was stared by her in the face - trying to place them. She is starting to show interest as to who are the visitors. Could this be the first step to gaining consciousness?

Tuesday Dec 6 10.45am: KK and SP brought durians and I decided to surprise her. After we woke her I fed a sliver of durians on her lips. Smile! :) I am sure that was the first I've seen in 3 months. Sat on her wheelchair from 11.30 to 1.30pm serenaded by PL until nature calls for her stoma bag to be replaced. First time transferred her directly from wheelchair to commode for that and an overdue shower. She slept the rest of the day as nothing is happening - no visitors.

Wednesday Dec 7 9.30 am: Was a hot night, and Yanti began the morning by washing her face. As I held her, the season's atmosphere encroaches from the carols singing in the background radio. But she stares darkly at the ceiling. I can't help but heave away the cloud of sadness and despondency amidst the Christmas mirth. But joy comes with a hot shower and her friends at 11 am. At 1pm LL came and she stared searchingly at his rascal-like face, LC bemused. The home visit Physio came at 3 and showed some new workout. She retired to bed at 5pm, grateful for the rest.
Bench-work Test-tubing(?) as Faculty in Chemistry. NUS 1982

Thursday Dec 8 9am: Her eyes slowly narrowed, looking shyly at the sunbeam coming through onto her bed. She is in pensive mood, seemed to be thinking while her eyes dart sideways and up the ceiling. What is she thinking, if at all? At 10, we decided to sit her straight on the tilt commode until it is time to bathe. But before that we did some bedside physio. As I strained to keep her foot straight standing my mind goes back not two decades ago when her father was recovering from the stroke that eventually killed him. Then Miranda was the main caregiver, sometimes stern at her father not getting effective physio for mobility despite the pain. Now it has gone full circle, her's being a greater battle because of her lack of consciousness.  At 11 CYS visited and NN gave her a kiss/hug but she was unresponsive. On the wheelchair she is not even responsive to mine! SO and SR came at 1.30pm but left without eye contact. So we bathed her, transferred her to her cosy bed and her eyes popped open.

Friday Dec 9 8am: Got another scare this morning when her expression of pain and discomfort lasted for a while. Then she sneezed! This prompted me to plan for an emergency routine, in case of a real "code blue". Emergency bag, what to do if ambulance unavailable, etc. Be prepared! Later MC gave some aromatherapy hints to Yanti, but her BP failed. She returned to bed at 3pm without showers. Later she warmed up to her MGS juniors who came for a night visit.

Saturday Dec 10 10am: Some friends and visitors told me they had dreamed about her being normal again. I too had vivid dreams and even recorded them[ ]. I know readers of this blog could be believers or unbelievers in the Almighty. If you do you might have to wrestle with Powers of Darkness - it comes with the territory, so to speak. Even Mother Teresa had her "horrors of the night". The other night I felt the urge to pray for Miranda's protection. I knew exactly the one standing there in my dream was the Adversary. Attacks come most in our moments of weakness and I cannot think of any other time with her that we are as weak as these days. This morning she must have felt perky after her showers, because her BP stood her up for the wheelchair, where she's been sitting since 1pm. Kicking often now, she sat 4 hours facing the lawn.

Sunday Dec 11 11am: Another gloomy morning when she awoke with glassy eyes. She seem to enjoy the hot shower from the look in her eyes. Back on bed my attempts to cheer her was deflected, as she often looked away after a brief eye-contact. At 1 pm, when sitting upright BP dropped from 150/84 to 79/59 - confined to bed today!

Monday Dec 12 2am: Got to hit those anti-inflammation pills again after a gout-induced dinner and caught her opening her eyes in the small hours. Earlier in the evening Si got the same scare as me on Friday morning - an expression of anguish and pain that lasted a few minutes. She couldn't do anything for her but to cry. Even a nurse or doctor couldn't. What do you do with an uncommunicative patient with normal vital signs having a look of pain and extreme discomfort? Guess there was nothing to do but pray for us lay people. At 10.45 this morning, just as I was complaining about the doctor's medication that makes her sleepy almost 24/7 she opened her eyes for one full hour.

Tuesday Dec 13 noon: Heard her call out for the second time (the first the nurse heard). This when we put her down on the bed a bit roughly after transferring from the commode, or after she did a deep yawn. She also improved on her swallowing - coke or water. She was introduced something sour (last week was durian), like yesterday's strawberries. Her revised medication is starting to allow more wakeful hours. Sorry for visitors who did not have a chance to interact before, as I only discover (thru a TCM doctor) that baclofen reduces wakefulness. For us, I do wish there were less trial and error, but it is.

Wednesday Dec 14 noon: There is always things that want to be done - now my other maid has to leave because only Miranda can renew her work permit, by Christmas. But maids are not forever. May be a good thing. So now I am home-bound doing house and keeping dogs. Meanwhile had to pack the expiring maid off and look for another. Miranda is now more wakeful because of reduction of the medication that had made her drowsy. The PT will work on standing her up today. How exciting! At 3.30 pm she half-stood on one leg, supported by us. But it will be some ways to go to strengthen her legs for support. But mentally? She is still not fully conscious even with eyes open.

Thursday Dec 15 noon: Her ears cocked, listening to the Bible DVD playing Luke. At 7.30am, friends who dropped in said she is more alert. But no signs of recognition, smiles or facial expression. Just curiosity. Her sis-in-law tried to stimulate her sense of smell (and taste) with various condiments. Seemed unimpressed. However she had an important visitor today: her mother has been in complete dementia for some time now. But they do not seem to recognize each other - yet. Even when Miranda was married her mother used to hug and kissed her. On the wheelchair her kicks have increased. Memories of her National Netball team-work? All Netball photo credits to PC:
The 2nd World Netball Championship (Perth 1967) when diminutive Singapore girls was bashed to 8th place. Miranda (4th from left) came home on crutches.

Friday Dec 16 8am: Came back walking the dogs to hear her gagging. An attempt suctioning her didn't do much (wasn't so good at it either), so had to sit her up and thump her back - the grandmother's cure. Hope it works...but it didn't. Turns out that maybe she is just exercising her vocal chords!! At 2pm her old Dunearn hostelites came and waited some time before she greeted them with her eyes. More condiments sniffing at 4pm (and tasting), then back to bed.

Saturday Dec 17 3am: Found her kicking left leg lodged in the bed side-rail. If the dogs had not woken me for their night wee I wouldn't have rescued her foot. A cool Saturday to sit for 4 hours near the lawn, entertaining visitors from 1pm. More visitors came to her bed at 6pm. Later in the night I was overcome with sadness and decided to talk to her. She responded apparently listening intently to my complaint, eyes didn't leave my face. She opened her mouth repeatedly, but no sound. But I knew she was trying to communicate. Maybe she was trying to console me.

Sunday Dec 18 6am: I felt better this morning. A good cry is therapeutic. She had a slight fever. Have to be careful there. BP too low to sit in the morning. However after 4pm her BP held up to sit upright till 7pm. Ended the day with good PT workout. No visitors except family today.

Monday Dec 19 1-5pm: Her MGS and NUS classmates came singing hymns and
carols while she sat sleeping(?) in the wheelchair. But being such a wet day, she might not have enough of vitamin D.

Tuesday Dec 20 4.30pm: Nothing happening more than the usual sitting out. However there is one small change: she is more sensitive to touch now. In the past touching her will not wake her but these days she will recoil as if rudely awaken if her legs are touched. Then sometimes her eyes will open.

Wednesday Dec 21 9.15am: Heard her cry out at midnight. More like a loud sigh that I could hear upstairs. The PT will try to stand her on both legs today. I am excited! Wish she is too, but she is still unaware. At 3.30pm, she was half-standing on both splint-strapped knees - for 15 minutes. I was wrong. She looked thru it all with both tired, half-opened eyes. At 7.10pm Yanti by herself transferred her from wheelchair to bed with little help.

Thursday Dec 22 11.40am: This is perhaps the largest group of visitors to bring her cheer - 14 members and staff of BTI. I think she saw all of them but not sure how many she recognize. Wish she can eat all those chocolates and goodies! And see the quilt of about 300 names? At 5pm JG came dancing but his antics were not recognized, though she looked and looked.

Friday Dec 23 noon: We have no children but Miranda's sickness taught the frustrations of having one. The gush of urine coming immediately after a freshly changed diaper and the bed-sheet gets soiled the instant it is changed. We started practicing her standing next to the bed, both knees locked but too much vertical motion could also cause seasickness and queasiness. However the vertical stretch is worth the vomit. Later in the evening more than 30 people came to cheer her with carols and feast in her presence. As before, she loves seeing people enjoy food. Thanks for the stimulation!

Christmas Eve 6am: Early this morning as my long shadow loomed over her sleeping body I gave her a fright. She convulsed and her eyes popped open. Then they settled. She must have improved because a vegetative person doesn't get surprised. However her swallowing is still primitive and my lack of patience has caused her to choke. 4pm and she went for her first outing - wheeled to her father's house where she spent her post-teenage years - this old 'barn' has been renovated.

A Christmas Prayer - that she be made whole again.

Christmas Day 6am: Try to eye-contact her to wish her, but they looked transfixed far away, large and round. Her throat must be dry as bones as she breathes mouth opened all  these months. Good chance for swallowing exercise and wetting her throat. 8pm: Its been a quiet day until her family came to be with her in the evening.

Boxing Day 2pm: Nothing to do and quiet so wheeled her to brother's home up the road. She slept through the scenery which is supposed to stimulate her memory. Rats! It must be the baclofen medication again making her awake in the night and sleeping the day. There she had Fanta for swallowing practice. That's supposed be a Christmas treat?

Tuesday Dec 27 5am: Her loud sigh woke me - she must be getting bored, lying there looking at the ceiling, being such an active person. Making funny faces and slapping her cheeks does get her attention but not for long. Her pastime if not sleeping is a long transfixed gaze to her left. So her higher neural functions are moribund. Her limbs respond in primitive lower brain activity reflecting the damage to the thalamus region. I just wonder how long and how much it is going to take for her to come to. Thought about it and decided that just surviving this experience may not be enough - I have to rise above it. Overcoming this has to be special.

Wednesday Dec 28 8am: She looked refreshed this morning. We look forward to another new therapy lesson today. With eyes closed there is little chance to engage her brain - we must do so more with external motor stimulation. 4pm therapy ended with nausea - too much vertical movement after lying long in bed.

Thursday Dec 29 11am: Before showers noticed she has dark rings around her eyes. Also she has not been taking her regimen of vitamins, even before her stroke. Ginko for sure will be resumed. At 2.30 MS and AW, her sparring fellows from A*Star visited. Though eyes closed and head drooping she was drooling. I wiped her and told her gently that it is alright as she is sick. She cried.

Friday Dec 30 6am: She is definitely more aware of her environment. Once when I walked in her door she opened her eyes. Or when I lifted the bolster her head appeared to avoid it hitting her.

New Year's Eve: 2011 - a year to remember or to forget. Lost 2 dogs and nearly Miranda. Now her brilliant mind is just a broken portion and her body lies stricken. Pi (the dachund) has left a hole in our hearts too. As we look forward uncertainty rules the world economic system. Annum horribilis? Hopefully 2012 is better. If not it may be harder to find a worse description. So I took my clubs and strolled the fairways where Miranda used to de-stress from her day with me. The memories flooded back. I recalled the greens where I struggled to putt and the bunkers afflicting her, or her finding my ball hiding in the rough. Even the time when she dropped her hand-phone or keys. On the fifth I did a hole-in-one. Wished she was there!

New Year's Day 8pm: She's more wakeful than asleep today, probably because of NY visitors. Her head invariably turns to her left and when I place my palm on her forehead she closes her eyes in comfort. I think she is ready for healing. Just that as it is it is such a slow process. One grain of sand today.

National Netball Tournament Winners (1965). Miranda at back row (center) was barely 17 then.

Monday Jan 2 11am: Pastor S and Sis H came with CK to pray and lay hands on her (I didn't know this when I laid palms of my hand on her forehead N Year's Day). For 20 minutes of exhortation and singing, she looked at them with fully opened eyes. So if you believe in the Bible, you'd believe in the healing reported therein as well. Miranda wasn't frightened or scared - just curiously looking and listening - then went to sleep.

Tuesday Jan 3 4pm: Nothing happening today. Miranda must be bored stiff. The whole day to herself.

Wednesday Jan 4 4pm: So the PT came and while revising her stand, decided to try remove one knee brace to straighten her leg. Then she stood, almost completely on her legs (of course with our hands steadying her). For once the pillar is now up, momentarily.

Thursday Jan 5 noon: Caregivers take care! Both me and her other caregiver (Sis-in-law Irene) had accidents yesterday. She tripped and fell while I walked into the edge of a door. Miranda had to stop her vitamins supplement as we found hard urine crystals this morning. But the ship is still steady and the shipmates scrambling. Today the other maid should arrive, so that I do not have to babysit the dogs thru' the night now. We also have to purge the Rhyl's tubing too (with coke!) since it is almost choked with vitamins.

Friday Jan 6 9pm: The visitors have returned - but Miranda still could not place ex-staff from CNPR - the center she started. However her swallowing has improved - hopefully by 19th Jan the hospital staff can discard the Rhyl's tubing. It would have been 2 months. One caregiver (sis-in-law) is now under observation for her fall. I'm still ok, though a little dazed. Thank God for maids! Without them our economy is threatened!

Saturday Jan 7 noon: Something interesting about the dogs. Skipper (the Sire) who used to sleep with her is a bit unsure of himself.  He used to guard Miranda against me. These days he changed loyalty - she used to be "top dog". Now it is me. The rest fall in line.

Sunday Jan 8 9.30am: We put in lots of effort to keep her tone - literally hours of physiotherapy, massage, moving, stimulating much to Miranda's discomfort, even singing and touching. Her body (skin, weight, etc) looks healthy but her left brain is still inactive - really discouraging to see her eyes still transfixed in coma, looking dead left. People outside will ask me "How is Miranda?" and now I am even afraid to tell them the truth.

Monday Jan 9 9pm: Four groups of visitors today. She made some effort to stare at their faces. The only direct brain stimulation I have for her is through her eyes, figuring out faces. But not for long - her dominant right brain now will skew her eyes left. How much sadness can one take?

Tuesday Jan 10 2.30pm: She seemed happy today. I can tell by her eyes relaxed and blinking rather than the large, glassy look into infinity. It is not Miranda to not watch TV at all. Therefore I conclude that she is totally deficient in visual memory related to the left temporal lobe damage.

Wednesday Jan 11 4pm: Noticed that she has been getting more seizures lately. Not sure these daily 4 or 5 total body spasms lasting hardly a second requires immediate medical attention. Spoken to the neurosurgeon and preparing for re-admission next Wednesday. Meanwhile hoping that it doesn't get worse. Miranda will be spending Chinese New Year at the hospital next week.

Thursday Jan 12 3.30pm: Had a consultation with her neurosurgeon and finalize details on her re-admission for review. This review is important as she has not been medically examined for 2 months comatose at home. It will determined a) whether she is fit for neural rehab b) whether she should proceed to have the cranioplasty and c) whether her swallowing is good enough.

Age 17 (front, right) she already had international friends. 1965-66 Pesta Sukan Netball Finals, between the Singapore National team and the British housewives.

Friday Jan 13 10.30pm: The greatest benefit of visitors is when they stimulate her mind to try to recognise them. There seem to be no other direct stimulation to her brain, other than the usual therapy. This last week she has little (or no) aroma-stimulation.

Saturday Jan 14 4.30pm: Had to struggle hard on the decision to proceed with cranioplasty or not - risk of infection or bleeding about 1 in 12. Doctor friends say no - let her continue neuro-recovery nicely until she asks for it. Yet I know from experience handling her that an accident on the scalp that might hurt her brain is likely, without a protection. Neurosurgeon said it is purely cosmetic, while the rehab doctor said it is low priority. My gut feeling is that most of us will not go through life with just a skin covering our brain. So it is a question of doing it on 25th or postponing it months later, when she becomes stronger. Get to the bridge first? 18 January, 2pm.

Sunday Jan 15 9pm: The injured brain does bizarre things. This is the second time I noticed her wide opened eyes oscillating from right to left, like a type-writer going on furiously. I asked the neurosurgeon Thursday but no answer. This is the kind of moment that you'll wish that she'll be better off dead. I already have many moments like this. Nothing I can do to ease her. I can only do so much. But we'll see whether next week's consultation will explain it.

Monday Jan 16 9am: I'm putting up this rough daily sequence of events in the visitation post for those who want to know what is the best time.
6 am First Feed (6 liquid feeds a day at 3-hourly intervals) - you can still talk to her.
7-9.30 am About 2hours of on-bed physiotherapy after 2nd feed
9.40-10.15 am Vertical Physiotherapy and massage
10.20-11 am Shower and colostomy bag management
Noon: 3rd feed and rest 1 hour - Yanti takes break
1-4pm or 5pm: Wheelchair time and sunlight stimulation (feed at 3pm and 6pm)
7pm-10pm Night stimulation. Last feed at 10pm, last turning at midnight.
(Miranda sleeps thru most of the stimulation, I take my break from 4.30pm)

Tuesday Jan 17 3pm: The nystagmus (brain pathology effect described Sunday) when she looks right is reducing. Also her seizures. Googling shows that the drug that makes her sleepy whole day also reduces it. We certainly have a few neurological questions to ask before she proceeds to surgery. She's happy today! I can tell when she shows part of her teeth with the mouth closed.

Wednesday Jan 18 noon: She enjoyed her usual therapy and showers today. She is used to this routine. Tomorrow we do it in the ward (13B Bed 16). Routines are not forever. In the next hour we will initiate an attempt to give Miranda back her usual face and skull - provided it does not threaten her recovery.

This is the last entry in this post. Next post - Review

Tuesday, 1 November 2011

Turning the Corner?

In "Restoring the Pillar" we waited for her brain to heal in deep coma. Then in "The Road Back?" we waited to interact with her through her eyes, though limited. In "Starting Over" we had more and longer awakening but the eyes were not always connected to the brain, hence there was little higher level cognition. As she begins her third month of emerging and falling back into coma the task ahead in this blog is to have her right hemisphere re-learn the duties of the left. Last Tuesday Miranda was evaluated for transfer to Neural-rehab. Although she was non-communicative she showed some signs of response among the visitors. The possibility of giving a Yes/No response by blinking of opened eyes was experienced. At the least she has indicated that she needed more food. She was also on a slew of medication for neural nourishment. Major obstacles remain. The damaged area of the thalamus would cause extensive speech deficiency (?). Left temporal lobe lesions left over from parietal hematoma require intensive rehabilitation of motor skills and audio-visual recognition. Drugs that supposedly improve brain recovery are non-existent, except in China and not proven. Brain recovery is not so well established in medical science. It has also become an exercise of faith.
 First Research Conference (Bretton Woods 1974?)

Wednesday Nov 2 9.30 am: After RD examined her, OT put her on tilt in-space wheelchair and did some stimulation tests after touring the surroundings. BP dropped 115 to 95 and she had to be returned horizontal after 30 minutes. At 11.30 entertained some visitors with half-opened eyes and slept till 2.30 pm. But she will respond by blinking more than once to say "no". RD has recommended closing her stoma to assist in rehab and cranioplasty to replace her skull flap scheduled for December 13 was questioned.
5pm: Distinctly heard a gulp from her throat. Was she swallowing?
Climbing Everest foothills (180km to Namche B) 1995
Routeburn, QT/NZ 7-day hike (1997?).  Other climbs were Kinabalu (1960s), Canadian Rockies (1980s), Cradle lake Tasmania (1998) and Front Range CO (1982)

Thursday Nov 3 9.45am: She will have about 1 hour of full opening, then next hour would be half open and droopy eyelids. 6pm: She seemed keenly listening to the Bible reading DVD for an hour, then dozed off. At 7pm tried something different to stimulate her emotional right lobe. Kissed her on her cheeks! Eyes then opened to find out who.
With Prof Morris Wayman (PhD Supervisor) & Mrs. Wayman. Toronto, 1980

Friday Nov 4 10am: Tested wheelchair and commode for purchase, but BP failure (110 to 87) prevented further tests. At 1130 PT moved her to the tilt platform. Lasted 20 minutes at 60 degrees. BP fell from 138 to 90 and then 85 (on return to bed).
4pm: Nurse tried small sips of juice and could coax her to swallow. Hopefully no more convulsive throat suctioning from now!

Saturday Nov 5 9am: Self quarantine (bad throat)
4pm: After sitting on the recliner for almost 4 hours she was hoisted back on the bed. When being set down we heard her groan for the first time! So far she scored zero on verbal response and hopefully this is going to change. But her speech recovery is tantalizingly slow.

Sunday Nov 6 10am: Sat up from 8 am, to be for 3 hours. Decided to wet her tongue with coke, her favorite brew. Speech therapist advised caution for liquids (severe dysphasia affecting swallowing). Also low blood albumin resulted in her swollen hands. Must exercise her, since PT would not be around for the long weekend.

Monday Nov 7 2.30pm: Sat on the recliner again from 8 to 11, but slept the rest of the afternoon. Unable to fully empty bladder again. This is hard to track - when is it full or empty?
5pm: Wanted to kiss goodbye for the day. She awoke so suddenly, eyes fully opened as if she had seen an angel or ghost. But it was transfixed somewhere else behind me - like a zombie. Even frightened me for a moment. Then she settled down to recognition. What has happened to her brain?
First meeting (CNY 1975)- "I was sick that day."

Tuesday Nov 8 10.45am: Put on the tilt table and pass 50 degrees with good BP. Eyes opened wide when transferred, but not like the "death look" of yesterday. Rested tired after the hour-long process.

Wednesday Nov 9 : Self-quarantine
4pm: Found out (third hand, thru the nurse) that the RD plan is to have Miranda discharged for home visit therapy within two weeks. She will be home for Christmas then. But this is not necessarily good news.

Thursday Nov 10 830am: Two more weeks training of nurse maid in bed transfers, feeding, detecting urinary problems as well as swallowing. Meanwhile equipment will be ordered for bed-bound care at home. Will try giving her a hot shower once the tilt commode is available. Stoma bag will be retained. But swallowing rehab is now in progress. The ST(Speech Therapist) also said that the blinking response that we were so excited about is inconsistent. What a blow! RD cannot give speech rehab till more appropriate response is forthcoming. Even when she goes home! Personally, I will say that more could be done by TTS rehab than to be send home for rehab visits. This is becoming a very difficult corner!!

First job in man's world (Singapore Petroleum 1975-6)
Friday Nov 11 : Self-quarantine
8pm: Heard that she passes the 60 degree tilt table test for 30 minutes.

Saturday Nov 12: Her eyes will now open any time we exercise her (or if someone kisses her). Therefore she must have come out of a vegetative state? Her eyes can only focus for a few seconds, but she has no way to telling you whether she recognises you. She must be able to hear - the nurses will always tell her what they will do, otherwise she will appear startled if a thermometer is stuck into her ear, or a toothbrush into her mouth. Pray that Miranda will soon be able to have a definite Yes/No response. Otherwise there is no handle with which to manage an active rehab, even at home. An unused brain in an unused body will settle into a permanent state of disrepair.

Sunday Nov 13: Self quarantine. Hoping there will be more visitors today, I am staying home to fight the sinus flu.
1pm: Heard that Miranda had her first hot shower in 10 weeks! She loves hot baths.

Monday Nov 14: What are the chances that she will have a definite y/n response this week? If so then I should consider her extending her stay at TTS or some other rehab hospital. If not, then it will be bacteriologically safer but less convenient medically to convalesce at home. This must be the parting decision I must make with the Rehab Doctor. In both cases we should start active rehab ASAP.
Noon: Spoke to the rehab MO. Looking at going home after Tuesday next week - Nov 22. At around 2pm the MGS bunch again came and cheered her onto the upright chair. Sat there only for less than 15 mins, then the BP faltered, while she snored. But we all know that the stroke has tragically stolen her usual cheerfulness and hospitality. Hope to see you awake next time!

Tuesday Nov 15 10am: The tiltable commode tested well but I was overawed by how much is involved in giving a shower to a totally inert person! The good news is that the tilt keeps her head and BP in place. The challenge involves drying and changing into hospital garb that is not easily changeable in supine positions. All these done while the BP keeps within range. You can actually see fear in the wide opened eyes if she is being hoisted, turned or moved extensively. So now we are all ready for home care - Miranda settled so comfortably after hot showers and all equipment on the way. Now for the home visit schedules of PT, ST and nurses. Plus the list of transfer logistics.

Wednesday Nov 16: Two medications madopar/levodopa and piracetam seemed to have helped her gain more wakefulness (as opposed to awareness). The former suppose to enhance her memory and the other to help in her dysphasia. Then there are others to help in the muscles (baclofen?) and digestion (domperidone?) as well as dopermine (brain).
10am: After a refreshing hot shower she got on the tilt table, eyes happily opened. Passed 40, 50 and 60 degrees.
2pm: Getting frustrated not being able to discuss progress directly with the Rehab Doctor - been 2 weeks and she is still inaccessible.

Thursday Nov 17: The dogs have been peevish and testy yesterday. Skipper, who was closer to her when our beloved Pi died weeks (I am still grieving Pi) before the stroke has been attacking her daughters. Maybe time for Miranda to go home and calm the dogs.
9.30 am: It happened again - she was sleeping so peacefully one moment when in the next her eyes will half-open, glistening and glazed, looking sullenly downcast.
My thoughts went to the Great Enigma in Job chapter 29,31. She will not lie there, fossilizing and wasting away. Yes - even though acts of kindness are not zero sum gains, Job eventually came forth as pure gold. But Miranda is still in the process and God will not be pushed. But these are just my thoughts:

For my days shortened and consumed like smoke, my bones burned as hearth,
My heart is smitten, withered like grass...bones cleave to the skin,
For I have eaten ashes, my drink with weeping, Thou lifted me and cast me down,
My days like lengthening shadows, I am withered like grass,
But Thou O Lord shall endure forever, rise and have Mercy and favor,
Regard and not despise the prayer of the destitute, hear the groans of the prisoner,
To loose those appointed to death.
Psalms 102:3-12

10am: Daily hot showers are the order of the MO? Does help in promoting wakefulness.
11am: Sat on the recliner until the hilarious JG went home at 3. At 4 the OT went thru the bed transfer rehearsal.

Friday Nov 18 7.30: Rushed up early to the hospital in appointment to meet the RD at 8am. But alas, she didn't turn up. Stood me up again at 12.30pm. Miranda looks more wakeful compared to yesterday but attention span less, e g 9.30 to 9.45am.

Saturday Nov 19 9.30am: RD discussed the following:
1. More advantageous to recover at home for a month before review in Dec 11 when she will need to return for cranioplasty on Dec 13. This will train for home care with attendant PT starting end Nov, 3X per week. PT will look at swallowing and chest. Cranioplasty should not be postponed as implant should be done once material arrives.
2. Auditory (music) combined with visual stimulation therapy should begin at once and especially at home. There are positive signs that her brain-stem functions are returning, albeit rather slowly. Colostomy bag is the hindrance that prevented AMK-type rehab. To review when more awareness allows it to be closed, so that robot-based rehab be possible.
3. Can try alternative medication (neuro-aid), but should watch sugar level.
12 pm: Confirmed with NS that implant and cranioplasty can be postponed to some future date.
3pm: For some reason today open eyes are limited to 9.30-10.30 am. Even when several A*Star academy staff came, her eyes were shut tight. A tight kiss to her cheeks are only worth a few seconds of opening. Maybe better tonight at 8pm.

  Yanti the nursemaid will continue to tend to Miranda 24/7 after she goes home. To protect the rights of those who cannot give consent Hospital rules strictly prohibit photographs of patients.
Sunday Nov 20 7.50am: Yanti is off today. Yesterday we also discussed caregiver burnout, especially when transferring home. They are like safe harbor and patients berthing ships. An Air Commodore was once told, "By all means save the crippling ships but the harbor must not burn!"

Monday Nov 21 11am: Met up with Zaopao reporter to verify today's story. Sat on the upright 4 hours with good BP. She passed this test this time. Also managed to do transfer without the nurses. Started ordering her supplies for 2 months' home recovery. In mid January she will be returned for review at the hospital and possible closure of stoma or skull flap. Then hopefully get her into more active rehab.
8pm: Heard that she opened her eyes wide from 6pm to 8.30pm. That's interesting. For once she couldn't go to sleep so that Yanti couldn't go home for supper. If you had planned to visit this night but didn't, eat your heart out! Maybe I should change my visitation schedule so that I can interact with her fully awake these 3 hours. But she goes home Thursday.

Tuesday Nov 22 9am : Walked into her room, but there wasn't anyone -she's gone for shower. And what good sleep hot showers give.
3pm: To prepare her for home Miranda must pass the vertical tolerance test. Yesterday morning she passed flying colors. But today dismal - her BP dropped from 125 to 107 to 95 within 10 minutes and had to be transferred back to bed from the upright chair. This inconsistency is troubling. 8 pm: Not many visitors today or yesterday.

Wednesday Nov 23 9.30am: She opened her eyes on schedule. After I talked to her I decided to put her specs on. Her eyes shifted to the TV. I knew she was watching it, because I've watched with her countless times before. But she has never been interested to watch "Ellen". Why now?
11am: ST gave a grim prognosis of her dysphasia condition. They gave her 1 year before she could swallow or talk properly.  One year? But we shall persist with swallow stimulation with lemon buds. At 11.30 her wheelchair weight showed good 18.8 bmi at 50.7kg and we managed to transfer to upright chair.

Thursday Nov 24 9.10am: This will be my last entry in the post. Mixed feelings stepping into the unknown. But staying 2 months in the same hospital room is no fun.
12 noon: Time to meet the pharmacists, dietitian, PT, OT and documentation nurse.

Thanks for visiting Miranda at the hospital, virtually. Sure beats infection.

<to be continued>     Home Therapy

Tuesday, 11 October 2011

Starting Over

PhD student, U. of Toronto, 1976 
 With parents (1960s)

Miranda started to learn how to breathe again Tuesday. She sees but we have no cues whether she knows what she sees. Once the trachy-tube is removed and the flesh closed over she should be able to utter something through her sound-box. But what sound? The physiotherapy sessions she received so far kept her limbs from atrophy. But can she walk? What about her arms and fingers? Besides it is anybody's guess how she thinks. If she cannot swallow or cough it is a serious anomaly that can cause pneumonia. A long rehab road ahead with deep pits and dragons.

Acronyms: PT: PhysioTherapist, OT: Occupational Therapist, NS: Neurosurgeon, RD: Rehabilitation Doctor

Wednesday, Oct 11  8-9am: This blog is being embargoed. Cool off before being flung in cyber-space. Once read the fat would have been on the fire. Little do I know that I am probably sick too. This blog has become my mental safety value, a catharsis of sort. Been going into the empty room every night, not being able to cast off the descending cloud of despair. But it has become better.

9.30 am: KK was there before me, lifting her arms and calling her. Her eyes are now opening on schedule, and for longer periods. She has the tendency to glance down my shirt, her eyes as if asking me where I got them. She knew every shirt. Did I write for visitors to wear bright colored shirts and blouses?

10am: Seems that yesterday's 30mins test went ok. Now for the 2hour spigot block. I could hear her heavy breathing now, her opened mouth gave me a whiff of oral inattention. Did they brush you teeth this morning? This has been one of my opening conversations.

2.30pm: Spigot blocked. Then came a hiccup sound during feed, like a muffled cock crowing. KK left a "Vitamins for Brain" baroque music to soothe her neurons.

6.30pm: Spigot test completed. Will be extended to 8, then 24 hours.

Thursday Oct 13 9.10 am: Late for my date, again. She was there, eyes waiting? I believe that constant eye-contact is one of the profoundest, if not the best means of brain therapy there is, whether you are comatose, normal or in-between. For her now it is the only link out of her dark world. The nurse said she bit her gums last night, but the bleeding has stopped. Blocked spigot started for the next 8hours. Can hear her snoring now.

12 noon: Her cough send the spigot cap flying. Have to reset her time. But good strong cough!
1.30 pm: With the spigot shut she tried to speak to me and I could hear the barest of whispers - her first words in weeks! But I desist her - she has 7 more hours of weaning.

Friday Oct 14 11am: Last night Si saw her face contorted into a sneeze, followed by what she thought was a sigh. 8hr spigot completed but the 24 hr test was interrupted by fever. Not since my 62 years to this day have I ever spend time in such anticipation in a hospital ward.
2.30pm : Five visitors returned from lunch to see her eyes opened. All excited, some eying her for the first time. Heavy breathing channeling air through her mouth and nose.

Saturday Oct 15 10.20am: ML and KK got an eyeful this morning after she passed her 24hr test. JB and AC saw her eyes opened too at noon. She must be coaxed into consciousness. There was also joy at having solid stools. Low grade fever to be examined.

Sunday Oct 16 9.30am Sang hymns and did worship. Eyes fully opened to her favorites. Fades in and out of wakefulness with brother M and wife. Till 10.45 am. When HS/KP came she half-opened again from 11.30 till 1pm. Again from 2.30pm for 3 hours when her nieces V and E arrived. I eye-contacted her on and off for two hours until myself got hypnotized to sleep.

Monday Oct 17 11am: Life begins without the "throat toilet". She must now learn to cough and clear throat by herself. And exercise her voice box. We will look forward to her first utterance in 6 weeks! Also first brushing of teeth since.
3.30pm: The PT sat her on an upright after physio. She sneezed, then snored while feeding.
5 pm: She sat for over an hour on the upright chair, unaided. The neurosurgeon came and confirmed again that she does not appropriately respond to sound. After they left JG came and sang for her. Normally she would be tickled pink by his hilarious antics and ML and I was full of hopes. But she just looked at him glassy-eyed and turned away glazed and half-closed. We were devastated.

Tuesday Oct 18 10.30am: Rehab doctor's view: to get a consistent y/n response before any meaningful rehab of senses (speech, throat or limbs) can start. This week is to prevent infections such as UTI worsening. Also to ensure emptying of bladder and tone improvement, while training home care maid to the usual management (toiletry, stoma bag, turning and basic physio). Target: get a consistent response by next Monday. Also a consistent time of wakefulness.

Wednesday Oct 19 11am: First piece of good news for a long time. She's been accepted for rehab. Despite her lack of consistent Yes/No response. In a week or so she should be transferring to the rehab. hospital. Hallelujah!
3 pm: Wheeled away for pre-rehab evaluation: ctscan, EEG and shoulder xrays.

Thursday Oct 20 10am: PT tilted her 45 degrees after workout. Good tone and BP.
11am: The OT hoisted her up and moved her around the ward - "environment therapy" on a tilt wheelchair. Fully awake when hoisted but slept through the tour. Stimulated with smelling ammonia, localized pain and sound.
12.30pm: Old friend TC came calling - her eyes opened but transfixed vacantly somewhere without recognition - like some memory is empty. Sometimes I would noticed she would turn to her left and then a sudden look of terror or helplessness. A withering, debilitated glance into space. Her brow would furrow up in bafflement - as if she cannot connect up to something she was used to doing. That would melt any heart who knows Miranda.

Friday Oct 21 11am: PT tilt again for 20 minutes upright plus workout. Good BP, but unable to shake off unconscious stupor.
1.30pm: Sneezed twice then the stoma bag leaked while P and J were praying for her. Then slept on through the evening visits.

Saturday Oct 22 11am: She's back to the business of sleeping again. Hope it is "brain under repair". Weekend is most boring for there will be no PT, OT or even doctors. Then at 12.30 she was hoisted onto the recliner, where she would be sitting until 3.30pm. Syl came to encourage. Si massaged while I worked her right arm supple.
2.30pm: KC & CG came along with the guitar, strummed her favorite hymns and laid hands of prayer: (Psalms 37:23)

The steps of a good girl are ordered by the Lord
And she delighteth in His ways,
Tho' she falls, tho' she falls, she shall not be cast down
For the Lord upholdeth her, with His hands,
With His hands, with His hands..For the Lord upholdeth her with His hand.
Tho' she falls, tho' she falls...she shall not be cast down...
For the Lord upholdeth her with His hand

Sunday Oct 23 9.30am Sang chorus and exercised. Came back from lunch at 12.30 to see her staring at the ceiling. TTS hospital ceilings are boring. Touch is the modus operandi for now.
10am: NS came and discussed about replacing her skull flap. The PEEK material to order after detailed ct-scans. Surgery may cause infection but aesthetic and protective. To be done December.

                         MGS Sports Day 1962 ('O' level '65) Standing behind teacher

Monday Oct 24 9.30am Unable to wake her today, so the rehab doctors left. But the PT tilted her on the table from 11.30 to noon with reasonable BP at 60 degrees. Periods of wakefulness should increase for her to be on the mend. Approval of nurse maid received - she must now train to tend to her at home or rehab hospital.
3pm: OT put her on a tilt wheel-chair and managed to open her eyes on a round of the ward.

Tuesday Oct 25 11am: Nurse maid started going thru the physio with the PT and she is to sit on the recliner for 2 hours or so.
3.30pm: The MGS alumni girls came and did awoke her some. No chorusing this time but some bible reading.
5pm: PL came calling her name. But neurologically unchanged - not able to recognize anybody. However she will look you in the eye if you get close. Try that - you may probably be helping her re-connect some neurons.

Wednesday Oct 26 9.30am: She is not sweating today as I greeted her. Once I came in with the air-con turned off and she was moist. Little did I know about the anguish in the comatose world, of not being able to control the environment, yet feeling its discomfort. Besides the routine of not knowing where to scratch where it itches. Not since she was comatose did I realized the trauma of sucking fluids from her throat to prevent them going into the lungs. I was always shepherded out when it was done in the trachy-tube, but to learn how, I saw it yesterday:

                                        Your throes of hardship, render me asunder,
                                        I  see you shudder as you gagged over,
                                        The tube inserted deep in your throat
                                        Cut me to the quick,  several times in the night.
                                        Love as my goal, yet torn and tortured to the soul.

11am: NS review of ctscan: normal bulging in dent area. EEG findings suggests mild diffuse encephalopathy, attenuation of activity in left hemisphere.
1pm: There are more visitors than caregivers this holiday, but they all care for her. Brother M, daughter E with A, then KC with his guitar and S with E. We sang and sang. Until J came. Eyes opened wide for an hour. Then shut till exactly 4pm.
6pm: When the niece family came, in throng the others. Drs. L and M, KP, D Wang and son, and P Yeo. She must have sensed the import of the visitors, as she kept her eyes easily opened for a while. Need coaxing to welcome them. Prof D Wang, himself enfeebled and fragile by a recent stroke called her name plaintively with no avail.  Left dejectedly saddened. Finally Si saw her till 8pm, with the nurse maid, tired with the visitations of the day.

Thursday Oct 27 9.30 am: Found her sweating under the covers. She has no way to adjusting the air-con or even kicking away the blankets like normal people. Yesterday when we were turning her, I received a rude awakening. Her calf muscles were all but vanished. They were virtually just flaccid flaps of skin. Two months lying down did all that. We have to get Miranda on her feet! With the tilt table. Everyday. Now rehab must not drag their feet.
11.30am Waited for RD while we tried our own PT. She awakes with vigorous PT.

Friday Oct 28 9am: She was looking downcast when we arrived. After some cheering up she looked directly at me and I sensed she is starting to have some recognition! We tried to wave at her eyes. She blinked. This is the first kind of response I have seen. Then EC from Sydney came in. She looked intensely for a while and we could sense that she was trying to place her. Looks like we are near to turning the corner - neurologically. But no. Just a roller-coaster joy. Could not recognize MGS alumnus SK who came just a while later. Somehow that neurological function fades in and out.
11.30 am: OT got the nurse maid to try transferring her from bed to chair. Failed because of her tone. Again at 2pm PT got the nurse maid to try sitting her up on bed. Failed again (stoma bag burst from previous failed attempt) - not a good day!
3pm: When JG came and cajoled her she merely gave him an incomprehensible look. Urghhh!

Saturday Oct 29 9.45am: Started to focus on visitors' faces. Went on till ML, S and F left at 11.30am. Punctuated by bouts of snoring stupor.
7pm: KK,Si saw her eyes opened wide till 9.30pm - end of visiting hours.

Sunday Oct 30 9am: We came upon her looking crestfallen, her shaven head now growing nicely, bent low. Then there is the unmistakable dent on her left hemisphere that looks like a sunken road. Her eyes were half-opened, glazed over, as if she was saying, "Why is is happening to me?" But Miranda is not like that. She is easily cheered when we relieved her of the warm covers. Found that her clothes were soaked with sweat again, as she had no avenue to tell the nurses of the room temperature. Eyes now opened more frequently as we sat her on the recliner. At 10.30 am WS, another US professor dear to her, came calling, but she was somnolent. He hasn't seen her for months and flew in for 3days just to see her. As I played "Shout to the Lord", WS tried again to arouse her to recognition, but to no avail. He wept.
2.30pm: More visitors - LC and GL, both nieces and their families as well as brother M and wife I. She must like company, as before - slept comfortably throughout the chattering. Then eyes fully opened at 4pm on schedule, after she was hoisted back to bed. But she slept through the 8pm schedule, in spite of D's visit. An up-down day.

Monday Oct 31 9.30am: The RD verdict: Damage to thalamus area ganglia will have severe limitation to speech and motor as well as visual recognition capability. Now on medication scheduled to improve these areas as well as rigorous OT. Healing will come from the right side, so favorite music/brain rest cycles as well as other right-brain simulations designed to help left temporal lobe cope with deficiency due to damage.
2pm: WL, GS and Cy came to pray and Cy found a way to communicate with Miranda. She now says by blinking her eyes (1=yes, 2=no) that she is hungry! So the dietitian will be setting up a fuller meal. Last night she seemed to want to say something to the night nurse. This will be the channel for rehab.
8pm: The eye doctor came and gave all clear for visual rehab.

Tuesday Nov 1 10am: Beginning to focus on visitors, looking intently on PL's face. Was rewarded with a serenade. But eyes opened late today, at 10.30 and then at 11.45. When the PT tried to put her on the recliner, BP was 138/70 then dropped to 95/, then 90/. Like yesterday she now cannot sustain her BP when elevated. Back to the bed, where she continued her contented snoring. Later at noon for the dietitian, her weight was recorded on a weighing wheelchair - 50.6kg (BMI 18.8) or a loss of 6kg since she fell. No wonder she was hungry - a good sign. Maybe the corner is in sight.

< to be continued in next blog "Turning the corner?">

Saturday, 24 September 2011

The Road Back?

Saturday Sept 24 12 noon: Miranda is being moved to bed 21 Ward 13B. Visitors are still confined to family and close friends. To avoid infection and being infected please sanitize and use mask. Note visiting hours: 9am to 9pm. Re-registration needed.

1pm: She has begun to cough more and clear her throat. But her eyes remain closed, quivering her eyelids. Is this the beginning of the road back?
2.00 pm: As they prepared for the transfer, W & L, A & M, M & I came around the ward and gathered for deep prayer, led by W. It was no sooner than a hour later that she settled to her new surroundings, with view of the large window, bathed in light. We gathered and coaxed her with greetings and salutation. 4pm:  She opened her eyes for the first time in 24 days! What a flash it must have been for her, ever so briefly, incognito. Thank God the next step is on the way for cognitive response! She should be encouraged with a dimmer surroundings. If you next visit her again, watch her flutter her eyes open. Like a miracle.

Sunday Sept 25 9am: Coughing and moving her jaws more often now. Neurosurgeon's view: Trachea-mask to remain until throat clears. Suction maintenance for next 2 weeks in the ward. Stoma may remain until a month further, till she is no more bed-bound. Preparing for home stay in 3 weeks. Yesterday's eye opening still an involuntary motion, according to Dr. EW. He lifted back both eyelids to reveal the left eye oriented this way and the right pointing another, unconnected - like what you'll see in a broken, bedraggled doll, upturned.

2.30pm: Her joints became very stiff, fingers curled into claws. V and E did basic physio on her limbs, as PTs are not available weekends. This is necessary, to avoid being a "foetal shrimp" (Neurosurgeon's words).

3.45pm: This time her eyes opened to a slit - V could see her right pupils through them. Her left eye was not so wide but L could see that she was trying to listen by the tilt of her head.

Monday Sept 26 9am: Trussed up against the pillow with her now misshapen head, her arms awkwardly askew, spastic legs kicking randomly once, one would not have guessed that she once played for the national netball team. She looks stern, severe, as if going to scold me again. Sometime the trachea-insert must come off. There is still lots of scolding left. Temperature 38C, being quite a spike so visitors now limited to family. Post-note: Trachea being weaned off by weekend.

12 noon: The sneeze awoke me at the couch nearby. To my surprise the trachy-mask is gone. She has been challenged to breathe entirely on her own. And maybe sneeze unhindered.

3pm: S and SE came just in time to see her open for a longer time focusing. This time the eyes seem coordinated or "connected". She tried to look. No even that seems too optimistic. The eye appeared fixated, in a daze as if trying to recognize your face. Then she appeared to try to talk and sit up. The PT did a thorough workout and clear some more throat congestion. When you visit, say your name slowly and re-introduce yourself again, let her gaze take time to recognize you.

Tuesday Sept 27 10.45 am: The PT did a courageous job of sitting her up, moving her head, neck and torso. Then she was left to hold up, even for a while. More exercise followed until she fully opened her eyes. Considering this a first time, her floppy body did well.

12.45pm: FC and a pastor friend came to pray and after a while she opened her eyes to look (yes, look) at me, pupils scanning as if to recognize me. This went on for 5 minutes, her hands clawing for assurance.
2pm: Colo-rectal surgeon concluded that tumor does not seem to exist as seen from colonoscope but suggested a final x-ray of bowel-prep before leaving for home care. (Note: Please comment if you have a view here.)
Cranietomy (bone flap closure) and closure of stoma could be done together after regaining full consciousness and progressed motor capability, possibly 6 months after home therapy.

5 pm: "Any more bad news for me?", the neurosurgeon could hardly hide a grin as I needled him. Apparently the worst have already passed:

1) She can be described as "being in a vegetative state with cycles of wakefulness and coma". Continuous coma for periods of about 2 years are termed vegetative.

2) As she is slowly showing progress, treatment will be considered in any exigencies for now. After 6 weeks from September 1, if her condition does not improve, or worsen, the back-off rule of treatment will be decided by me in consultation with informed family members or caregivers. The 6 weeks period itself can be revised based on physiotherapy and other progress of consciousness, in like consultation.

3) Plans are in place to have her discharged for home or therapeutic care in two weeks.

4) She is almost certain to be bed-bound upon discharged with full dependency care, but her progress does depend on her state of gaining consciousness and therapy.

5.30pm: She awoke during examination and she looked at me with both eyes. I can never forget the look.

"Kian, I am not afraid of death, but I really dread lingering suffering", that look made me remember those words from her during better times.

Wednesday Sept 28 3.45pm: The day is half gone and I have nothing to say.
6.30 pm: V arrived with children in tow to cheer her. Eyes opened aimlessly after physio done, despite Z's encouraging shouts. Looks like her conscious recovery flows and ebbs. Will have to wait for a better day. The corner to be turned seems a distance away.
                                   "We are waiting!  we are waiting!!"
Thursday Sept 29 11am: Neurologically impasse. However as she opens eyes fully during physio, it is really encouraging. Normally she enjoys back-scratching and she seems to like backslapping! More coughs and expunging and the trachea insert might be out even by next week. 11.30am: The PT put her on a chair. She seems contented sleeping there for 1/2 hour at a time. Sat for one and half hours unsupported. The nurses began laying her down.

2pm: Got back from lunch to see her back on bed, eyes opened. Seemed to scan the environment, though right eye still slanted left. I approached her and she scanned my face curiously for a moment, then shifted to the sunlight. Again I called her and she shifted back momentarily. Then both eyes now moved to the left ceiling. For 6 or 7 minutes she looked. Then it hit me. She doesn't know me. For now. The machine beeped. Sensor moved but the heart rate went up. To 114 bpm. ECG please.

Friday Sept 30 1pm: The PT worked her and told me her eyes opened. But when I got back from lunch with a visitor, she was seated unsupported, tired out and eyes shut, for a good hour. That remained so on bed for the rest of another uneventful day.
After-note: Got a call at 10pm that they were fully open when niece V&L, family doctors L&MY dropped in.

Saturday Oct 1 8am: All the prayers have enabled us to crawl out of debilitating September. She belongs to the group whose eyes open only after the 4th week. Good recovery prognosis for openers during the 2nd or 3rd week. There is hope yet, although the usual dark prognosis on left temporal damage came from the latest ct-scan. 3 weeks thereabouts to discharge.
11 am: She tires all of us out when we give her Physiotherapy. But she does not even open a slit to see AC and JB, AC and WW. However Si, KC and wife got a slit welcome. Then at 4pm more of us got tired exercising her and she rewarded us with more open eyes to greet ZeeCheah, grandson and J.

Sunday Oct 2 10.30am: Barium NMR gastrography scheduled for Monday to complete the colon exam. Also trachea weaning starts to complete Thursday. Miranda is unconscious and is likely to be discharged bed-bound in a couple of weeks. She will require frequent interactions during the wakeful cycles to regain speech and limited cognitive skills. Only with full consciousness will she be wheel-chair stable for motor rehab, etc. When will that be? The Lord knows.

3pm: Self-quarantine (flu)

Monday Oct 3 9am: Running nose stopped mysteriously to put me back on watch. I had watched her silently from the bedside, as if in deep sleep, mouth ajar, as she is wont to do normally. My mind flashed back to the early Friday meeting room, when the neurosurgeon returned after the miraculous recovery of her expanding brain and explained sullenly the risk of removing the huge clot - one outcome for my permission to proceed would be a vegetative state, exactly as it has turned out. I now realize that the neurosurgeon wasn't brain-washing me to be prepared for the worst. But at that compressed point in time was the most heart-wrenching decision I had to make in my life, leading her to something she may never want, now or in the future. It is, on hindsight, the right decision, I've left the door ajar, for God might yet do another miracle. Slamming it shut would be most convenient for me and others but it will leave me with nightmares of "what-ifs". So now we are still waiting...

2pm: Came back from lunch to see her lying there eyes open. Her eyes seem to have a pleading look, like she needed water for her dry throat, jaws grinding. But there was nothing I could do until swallowing is purposeful. Found out that earlier she had failed the trachea test - her BP went too low. Could it be the after effects of the gastrography? Results not in yet. For that she even missed her PT exercises. Heart-rate went 114 as her arms and fingers curled up like giant rubber-bands. Later (5pm) BP became low, and temperature high of 38. Not a good day.

Tuesday Oct 4 9.15am: The skies have been weeping too. I arrived late to see her lying there eyes fully opened. I hurried with the soaping. After drying my hands I frantically looked for her spectacles. As I placed her on she seem to be able to scan the scene, pausing here and there on the framed pictures and window outside. This time she looked for 25minutes. But her fingers tightened and her arms taut as cables. Heart beating fast but the fever spike subsided. She turned her head when the OT opened her fingers. The most disturbing was when she looked straight at me sticking her tongue and moving her jaws..there was nothing I could do for her dry throat, if only I could offer her the coke.
11am: The stand-in PT worked her with me, sat her on the bedside and got a good BP. Her head droopy she looked like a lifeless doll. But it was progress.
1pm: She opened her eyes again - the third time over 5 hours, peering through her specs. Visitors are encouraged to stimulate by interacting with her opened eyes. That seems to be the next avenue to advance her neurologically.
Looking at her shriveled left lobe I cannot help but wonder what part of her will we be missing. One finding says that "Left side lesions (in the left temporal lobe) result in decreased recall of verbal and visual content, including speech perception". Miranda is not an oratory giant, but her choice of words in clear thinking above muddled emotions have resulted in decisive leadership. Being a person of her word, her strength of character shines through them. I saw this in the visitors' faces the day after the craniotomy, when her left forehead was swollen bloody. The women had a rush of tears and some men looked with eyes welling up. Here was their confident leader with knowledge weaved into masterly decisiveness lying broken and vulnerable. And then there was her logical prowess, speeding along ahead of most. Now but a shriveled shadow. Her objective, deadpanned approach to multifaceted problems was definitely left brain. Whither has it gone? And then there was her memory. She would recall in amazing detail what we were doing on my first birthday of meeting her some 30 years ago. Directions of places where she only went but once years before, clearly etched on her mind. Then her commanding presence, confident when faced with a critical decision, backed up by her memory banks. Is it still there?
Husbands at critical points of life may ask "Who is this person I loved? And who is she now? Can I love her again? Will I?" It may be too early to ask. But it dawned on me that the battle has only just began. Or is it a long war looming? Then the words echoed - "Better or worse, in sickness and in health..." - we are commanded to love as He loves us - unconditionally. End of discussion.

Wednesday Oct 5 11am: The PT, OT went through their paces. Sat her on the bed, limp as before. But sitting on the recliner seem to be relaxing. Gastrography show discontinuity in lower intestines, but surgeon decided fleet enema will do, followed by Xray to complete the process. Trachea spigot challenge to resume next week.
7pm: Heard that V&L and children had a great 70 minutes interacting with opened eyes. What the neurosurgeon ordered. But I had no heart to remind them that she sees but not perceive.

Thursday Oct 6 9.30am: Before I could do my usual starting monologue she opened her eyes during feed. Then closed shut till the PT sat her up and did the thoracic turns. They then lifted her to the recliner where she will sit contentedly for two hours.
12 noon: Had my first lesson on diapers and stoma bag management. Miranda doesn't mind, at least from her reaction. After that I thought to myself - that was the most decent thing I could do for her now. I am aware that some friends of hers might be angry at me for not doing enough and letting her extend beyond herself to end up like this. To an extent I stand guilty. Because Miranda is not one to be led about if she has the means. Their anger and my guilt now do nothing good.

Friday Oct 7 9.30am: Again before I began she opened up, and it became less of a monologue. But after the workout and suction by the PT, her BP dropped even to 102/53. The recliner position was abandoned and she returned horizontal. A comatose person cannot tell you if she is dizzy. But suction fluid clear. Leaky stoma bag. Visitors note eye-opening times are 9.30,11am, 2.30 pm,4pm and 8pm, for now. A clarion call to stimulate her visually, as it will do what may not be done neurologically - "reconnect the brain". Wear bright clothes, she'll look you over.
1pm: Her right fingers straightened - the second time I've noticed happening, as if she was swinging a ratchet on her left hand.
5pm: V brought her children and little Z noticed two bits of dried blood no less than 2 meters away stuck on the opposite wall from her trachy spigot . Quite a shot.

Some visitors have said they came to visit me too. How was I doing? I recall the story of a dog lost during the March Japan tsunami. She had a mate that appeared dead next to her, but she stayed whimpering in encouragement. Ever so often she would run off, looking for scraps or something, but returned to his side, nudging to resuscitate him. Many times doubts and a pall of deep sadness are overwhelming. I had to be strong, the visitors said. And so I ride out doing the numerous errands - looking at beds, planning renovations, seeing the lawyers, insurance, checking bills, nurse-maids and banking besides catching the doctors in their rounds to make informed decisions. The caregiver seems to be the extension of the nurses too, ensuring no infections, helping and informing visitors. But I have helpers. Like that dog I return to her side every morning, hoping for wide-eyes. Theirs was a story of great fortitude, and it applies to all creatures. Be that knight with a blue shield, slaying dragons against her recovery.

Saturday Oct 8 9.45am: Sleepy head. Even after physio. Nothing today.
Sunday Oct 9 9am: The alarm shows a heart-rate of 114. Traces of blood coughed from trachea tube. Stoma bag filled into a cylinder with gas about to burst. Nurse please!

Monday Oct 10   9.45am: The skies to me are crying more nowadays. I sat there silently watching her - the top of the trachy-pipe making circular motions with her breathing cycle, her sunken skull gently throbbing. My mind drifted.

She is called a terrific person. Let me share what is it like to live near the fire.
She is in all points more likeable than myself. Everyone lauds her openness and generosity. Acutely aware of the feelings of every living being, she would be the restraining factor of my outbursts. But let me just say that her generosity has its limits. Miranda has her favorite persons. As well as her despicable ones. And she often roots for the underdog - worthy ones.

Last week,in the morning bus I could see people standing stoically, staring blankly at the moving windowscape. Rows of commuters each one with a CPU humming away in their skulls. It controls all life - from the vital breathing apparatus, the digestive muscles, the motor balance as they sway this and that way in traffic, among others. Most of all, it defines consciousness, cognitive awareness, recognition of a face they bump into and the instinct of avoiding danger. They were not zoombies, but could easily be. How fleeting, temporal! One weak vessel in the skull could hit you like a thunderclap and the entire body decommissioned. You would not even wish it on your worst enemies. The seconds of our life tick by but we think nothing of it - the brain ticks on, orchestrating the vital functions of breathing, feeling, seeing - all consciousness. Really really thankful for a ticking brain!

10am: It happened again - almost imperceptibly her left fingers moved, then her right arm lifted, clenched fists. What can we read in it?
4pm: I flew back to her side to tell her what I did today, correcting a mistake I made in choice of lawyers. Often I tell her of my misdeeds, quite reassuring. The MO came to change the spigot size to 4mm from the previous 7.5, one reason why she failed to wean it off this morning. They asked me to leave, sparing me the agony of seeing blood on her neck.

Tuesday Oct 11 9am: The taxi was determined to run me over as I struggled over the rain- drenched road. Must avoid sorrow upon sorrow, I thought. When I walked in she was awake, looking at the ceiling. Dropping everything I started conversing. It went on for nearly 40 mins. I whispered to her the new "toy" I planned to buy for myself next week at Funan. Then SC and later D walked in, pleased as Punch seeing her opened eyes. The PT, another new one came, exercised her and started the spigot test - 4, then 5 till 15 minutes. BP ok, heart-rate ok. With the trachy-pipe shut she is now breathing through her mouth and nose. Will try again this afternoon. Looking good - maybe we are on the right road back after all.
<to be continued> Starting Over

Monday, 5 September 2011

Restoring the pillar

Miranda Yap has been comatose since Sept 1 at Tan Tock Seng Hospital ICU. We follow her here to cognitive recovery as God has determined:

Monday Sept 5: 4pm
Praise God !! Now both legs are active and eyelids quiver. It takes an anesthetist like S to say that she is breathing mostly on her own, with minimum help!! But I would have no idea what those scope traces mean even if I can tell you how to make the oscilloscope.
Sedation is minimum and BP strong. Please go on - breathe well so that tracheostomy not needed. BP excitable so that nurse even now say visitors should slow down exciting her, but next days may be susceptible to infection. There are more hurdles coming. Independent breathing should be at the conscious level..she is God's work in progress!

Tuesday Sept 6: God deals with the outliers

Had my second nite of 3 hours uninterrupted sleep. I've been told that the chances of full cognitive recovery for her severity of hemorrhage is 20%. But that is statistics and some have done better. Come Wednesday (tomorrow) or thereabouts the team has to make the decision of tracheostomy (opening in the trachea to assist breathing). But I hope that will not be necessary. The doctors have to determine the risks of gagging without one, as she is not fully conscious. Also chest infections are notorious leading to life threatening situations. I would like to welcome expertise comments from you - please help me with an informed decision. We will deal with higher level thinking later. The real Miranda will have to re-emerge slowly, one step at a time. Ne Pas?

Tuesday Sept 6: 4.40pm "Did you see that? she's moving her jaws!" KG and L exclaimed. And her left leg has kicked itself up to the edge of the bed. The neurological GSC rating is M4 with M6 being cognitive active like "raise two fingers please...". So we must be patient as not to run ahead of Grace - she's has some ways to go before she knows who you are. But we'd like to believe she knows - something we call Faith. As if to back-pedal, her assisted breathing from the ventilator is now increased at night - just a precaution?

Wednesday Sept 7 3.20pm Here is more of the briefing I had from the Registrar on Tuesday. The attending Physician-Surgeon E is on leave till Friday:
Fever spikes are expected (last nite T=38.8C, today 36C) and antibiotics continued. Probably tracheostomy (throat toilet) will be pushed back till after neurosurgeon's return. Nothing planned for the 2nd aneurysm (which was found on the 2nd scan), as its size (based from a 1998 study) has v low chance (0.5%?) of rupture and its location not as threatening. Recovery status probably better than 5 on Friday. Tough cookie even pushing her right leg. Edmund, care to add?

Wednesday Sept 7 9.10pm Like two small leaves quavering in the wind, the shut eyelids are now quivering more as you speak. One would have hope that it becomes the last scene of "Avatar" but that is probably not how the neural synapses connect. Only God knows how the brain recovers, since that must be how they were formed when we became conscious and came into being. Quite an experiment to find out isn't it?
Note: From Steven Tan's comments on Prayer schedule blog:

For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139:13-14

Thursday Sept 8 9.30am  Overslept but didn't miss chance to see her moving her head, ever so slightly, and some throat reaction. Everything else same. The call came at 10. Neurosurgeon E say better to have coiling done now, on the other aneurysm, since it is risk-compromised by other earlier rupture. Slot at neurological-diagnostic radiology (NDR) at 11am. After some more phone discussion the NDR surgeon came and was given a clear briefing, procedure, risks, results. Called with S and L and decided to proceed.
11am : She is now wheeled to NDR operating theater and under GA for next 2-3hrs. Please note no visiting until 4 or 5 pm. Watch this space.p

13.35 pm Got the call from NDR NeuroDiagSurgeon that coiling has completed and be back ICU. Visitor-ready in couple of hours. Some vascular spasms are seen that may derail things later, but risks from haemo-dynamic pressures are greatly reduced. So be guarded.
4pm Latest status from attendant neurosurgeon E: Angiogram shows good coil but brain spasm detected. Driving BP next so visitors will expect to see high readings. This dilated brain blood vessels from vasospasms. Another ct scan expected tomorrow to confirm progress. Need to guard unforeseen problems next. Visitors can start to pray for eyes to open next few days to 2 weeks (Yes!). But cognitive only. Have to wait longer for higher level activity response. Expect temperature spikes(sigh).
5pm: Stole away to play a bit of golf. Earlier looked lovingly at her bag where I had routinely and absent-mindedly loaded up with mine. Wonder how long she'll be able to walk the greens again.

Friday 9 Sept 9 am: Grinding her teeth? Probably another non-reproducible motion like the eyelids. She could "hold" my hand but motion not reproducible.
2.30pm Neurosurgeon E guarded prognosis:
Currently have primitive pain response, post-op CT scan OK
Two issues a) Vaso (vascular) spasm to be cleared : Next 5 days
b) Infection to be watched continuously. "There be dragons here."
Possible rehab 4 weeks, depending? for speech, motors, intelligence (dominant side). Next 2 weeks (?) in ICU to watch developments before next stage.
Longer term prognosis will be clearer within next 4 months (2-4 months)

Saturday Sept 10 10am: "Ring round the bushes and up the...", ML finger-walked up her left arm. Her face broke into a faint coy smile, Mona Lisa-like. I know she doesn't take to massage but she's certainly ticklish. Hope somebody can reproduce this! She is on a fuller course of antibiotics due to a low grade fever and the EVD tubing (brain fluid) needs to be replaced. If she can clear her throat more purposefully it will be more reassuring.

Saturday Sept 10 noon: Tracheostomy to proceed Monday and EVD tubing may be replaced to reduce possible infection (unknown). Vasospasm reduced to 5 from 8.5 Please note that visitors will be limited to family and close friends (very sorry) for next week or so. But if you consider you are close enough to visit please feel free to come cheer her up (such as what ML did) and I would vouch.

Saturday Sept 10 ?am: "Hello Sally this is Miranda", "Whoa where are you, you woke up?" S gasped on the phone. "I 've awaken long ago - was with you people around the ward. Technology in medicine has enabled me to make this phone call." Then S awoke.

Sunday 9am: "Miranda move your eyelids if you can hear me". She did. Then IC repeated the request after the eyelids were still. She complied. Three times.
12.30pm: HH and J came to speak to Miranda and J started to talk to her and stroke her left arm. Then a muffled sob, her expression appeared like crying.

Monday Sept 12 9am: Tracheostomy postponed for further observation. Pray that she can cough and clear her throat purposefully. Consultant neurosurgeon (CS) prefers her to breathe consciously. Fever spike. 4pm: More eyelid quivers for favorite grandnephew.

5pm: X-rayed the bloated abdomen. Wheeled for ct scan to ensure the bloated intestines are ok. Probably small irritation as still flatulent.

11:45pm: After swallowing the sleeping pill (hope I'm not addicted to it!!) the call came. The intestines are blocked and needed intervention. Not life-threatening. Watch this space tomorrow after the 8am meeting with the general surgeon:p

Tuesday Sept 13 7.45am Colon-surgeon gave a dark prognosis of what the lower large intestine block may be. As she's in coma best is a colostomy a redirect out to an external bag. Biopsy when she recovers. Tracheostomy and redirect of EVD (brain fluid) tube will be done just after the colostomy. Lord!
10.30am: Wheeled into theater operations to last 4 hours. Pray.
Medical notes: Growth "mass" located at splenic flexure restricting the lower large intestine. Too risky to remove or do biopsy or even colonoscopy. Question: Why no earlier symptoms of blockage when healthy? Why now? Post-operative biopsy and subsequent intervention is possible and colostomy "bag" collecting the diverted waste can be reversed and sealed. At the same operation the ventricle functional shunt tube that returns brain fluid to somewhere in abdomen, under the skin. That and the tracheostomy will last some hours. Nobody knows what the "mass" is, whether it is malignant, etc, until a biopsy is possible.

4pm: Completed colostomy with minimum blood loss. Starting to clear left & right of it. Tracheostomy took a longer time but finally in. EVD tube replaced.

6.20pm ColonSurgeon said she's still bloated so will review her case if persist. Cancer markers negative but real joy only from biopsy when she's ready. Using the stoma for colonoscopy or endoscopy.

Medical Notes: Drs S, L and M discussed about the blocking "mass" or swelling may be edema. Albumen was noted to be low. Comments?

Wednesday Sept 14 8.20am Faecal matter still stuck in Xray, advised to wait&see. But troubling signs on right lung. When vf shunt to be inserted next week(?) then perhaps an endo or colonoscope can be inserted around same area. An odd prayer request-that she moves her bowels. Will update what's happening in the lungs...

1 pm update: Xray artifact no pneumonia. Also vasospasm gone and BP now normal. Waiting for bowels to move.
5.25pm: CT scan came back normal so condition unchanged. "No news is good news for now". But neurologically this status quo cannot be good long term.

Thursday Sept 15 8am:
Gut Plan - gas is moving but time needed to move faecal matter. Bloating reduced but not completely decompressed. Stoma to be replaced and when intestinal walls stronger and rested will colonoscopy/biopsy be done (next week?)
Head Plan: Neurologically still hover between NSC rating of M4/M3 (slightly better than last rating). Left area of thalamus still not fully recovered, so she is not able to wake (open eyes). Since vasospasm is almost nil, BP will be slowly lowered. Everything human has been done, now only God can recover the brain. The worst prognosis is that she'll be completely bed-bound.
Protection: Still challenging the EVD tube (fluid draining from the brain) to ascertain its requirement. Infection very little signs so far - lungs are very clear (thank God).

9pm: The smell can be overpowering as you enter the room. Can only be good for her as decompression must have relieved her abdomen.  But if only I can relieve her dry throat as she sleeps mouth open. She moves her mouth but must still be dry as bones. Poor girl!

Friday Sept 16 10.30am: Her bowels moved and stool in bag! Thank God. At least now they can feed her normally, wait for intestines to settle and strengthen, then do investigation. Neurologically jury still out. She's moving her mouth and trying to clear her throat or wet it (don't know). More news at noon from neurosurgeon.
12.30pm ICU briefing: Breathing improved so "trach-mask" tomorrow without hose encumbrance. Hopefully rest of blockage released as faecal matter rather than "tumor". Regular gut feeding tomorrow. EVD challenged to 15 (equal is 20). If cranial pressure is normal at 20 then vp shunt ( another procedure) not necessary. Miranda wake up!

3pm: SE was with me next to her when we heard the sound and we broke out in praise. Decompression is on its way! EVD challenged to 25.

Saturday Sept 17 11am: Trachymask now - she's breathing on her own, moisturized throat. BP support drugs off so less tubes now into her. Still dextrosaline feed but regular gut feed tomorrow. Stomach distension soon reduced with more stools out. No infection, lungs clear. Colonoscopy Monday when guts are strengthened. Maybe HDU (high dependency ward) or even general next week. Neurologically still NTS-M3/4, so still no opening eyes yet, but EVD tube out today. Except this all the rest are good news. Thank God! Then ask that her eyes be opened!

Sunday Sept 18 3pm: Bereft of the plethora of tubes, wires and probes that goes in and out of her as well as the trachy pipe that stabbed menacingly right at her throat, she is now able to slowly shift her half-shaved head up on the pillow. On regular feed down her guts, she has started to move her jaws and appears to cough or move her tongue. Neurologically however she is on no-man's land - only able to quiver her eyelids and her upper limbs extended outwards in primitive distension. However her legs are more active and her hips could make limited upward movements.
5pm: She looks "angry" and perturbed - Is she becoming normal?

Monday Sept 19 10am: Still progressing as before. TPN feeding over to normal feed. Gut review tomorrow? Lower limbs are still more active. Temperature spike, but still low grade fever.

Visitor information: She is now relocated to bed 6 within the same ward. However as before you are advised to wash outside the ward if you intend to make contact.

Monday Sept 19 4pm: IC saw Miranda did her first yawn in 3 weeks!

Tuesday Sept 20 10 am: She is now in high dependency room 6 (same ward 3a). Neurologically still the same. Fever spike - 37C.
4pm: The possibility of a malignant gut tumor will be investigated soon sometime tomorrow by an anal colonoscopy to be followed by biopsy. The surgeons also felt that resolving this before transferring her to general ward would be better as they continue to observe her brain pressure. By now it is hoped that the intestinal swelling or edema has subsided and the gut stronger for the procedure. Pray for a safe result.
8pm: Meeting with colorectal surgeon.

Wednesday Sept 21 10.30am: Fasting has begun for 6 hrs before colonoscopy. Showed ICU team that her eyelids seem responsive to visitors' words and reproducible. This is encouraged. Wheeled away for brain ct scan to see effect of removed EVD tubing in terms of pressure.

10.45am Brain CT scan is ok so no need of vp shunt.
4.30 pm Waiting for colonoscopy to be done in bed 6
6.45pm  Colo-rectal Surgeon held up, procedure postponed to tomorrow, back to gut feed and fasting to begin at 2 am.

Thursday Sept 22 It has been three weeks to today, passing like a gale fluttering open pages of a book. Odds against full cognitive-ness are rising each day. Taking a hard look with the neurosurgeon yesterday...
11am: Colonoscopy postponed again to 12 pm. Hope she doesn't get gastritis!
12.30pm Colonoscopy result: No tumor no blockage no biopsy! Thank God!

Friday Sept 23 3 pm: Continuing with the hard look with surgeon yesterday here is the revised prognosis as a result of the absence of  colon-malignancy:

1). Miranda will survive this incident even if coma exceeds 4 weeks
2). Sometime within the next few weeks she will open her eyes, but incognito
3). The process of regaining cognizance will depend on therapy thence
4). She is likely to be bed-bound at the beginning of home care and fully dependent, on trained nursing maid, even up to 6 months hence
5). There is still danger of infection or relapse during coma, and after
6). Be prepared to see a different person from the Miranda we used to know, the progress to "near" normalcy depending on therapy. Unlikely to regain full cognizance because of damage to left thalamus.
7) How much is "near" depends on progress - from vegetative to some level of intelligence.
8) This prognosis may change as time progresses

Saturday Sept 24 11am: Transferred to "A" ward 13B bed 21 Note : All visitors still required to register before using the lift to 13th floor. Sanitation and mask for entry to room. THIS PAGE WILL END HERE. Blog continues in "The road back?"