Speech Mountain

On the day (Sept 1 2011) of Miranda's burst aneurysm blood probably first seeped from the left side of the brain artery to the left temporal lobe (Wernicke's area). The subsequent life-saving procedure of relieving inter-cranial pressure (craniotomy) probably caused more blood to flow and clot. The resulting haematoma was massive (57 mm widest ctscan) affecting areas that result in the condition she is in today. On the road to a very slow recovery looms a formidable obstacle - her inability to speak. Left side lesions are known to reduce recall of visual and verbal contents, including poor speech perception. Hence poor language comprehension and inability to form words. Therefore if one wishes to communicate with her two effects which we take for granted must happen: 1) Can she comprehend what you say? (she can certainly hear) and if she does, 2) Does she have the memory and its recall to form words in reply? As we proceed on the road to cognitive-ness this mountain must be breached.

The left temporal lobe is one of eight lobes making up the brain. Her infarct was in the left subarachnoid chamber. (illustrations from http://www.neuroskills.com/brain-injury/temporal-lobes.php:)

Monday Mar 26 11am: She is perky today, having gotten back her sleep cycle. Have tried with some success to coax her swallowing saliva or phlegm. Tried to persuade her to utter something (anything) but failed. In the afternoon Home Nursing Foundation nurse helped changed the troublesome feeding tube. In the evening close friends came to see if she can respond to more interactions. This month we should actively try to have her utter something and encourage her vocal chords.

Tuesday Mar 27 noon: She is getting fat. The knee gaiter does not fit and the stockings are tight. Gives me a chance to joke and see if she utters something. No more afternoon snack - which is nothing more than another can of Jevity.

Wednesday Mar 28 10am: So we changed her feeding cycle to 4 hours hoping to lose some weight. Visitors can come after 10.30 when therapy, showers and feed are done. She sure looks tired but grateful to lie down after the long sessions. She did groan in relief but I was looking for something more repeatable.

Thursday Mar 29 6pm: Last night she was at her brother's home and her eyes were filled with endearment for the infant grandniece. She gazed in fascination at all the children. But once they moved off the zombie look returned. Then, like today I have to fight doubts from all directions on whether she will be conscious again. I realized that these doubts are what I hear or see externally. They say God's healing power is beyond visibility and may even be in spite of my faithlessness.

Friday Mar 30 10.30am: Even I can tell she's more alert today, having to see her everyday. No more calling her night owl nor fat lady, though certainly her diet is something I have to watch. We used to joke that Miranda watches her diet by checking my weight. Also I've detected soft whimpering whenever the therapy threatens pain. Good sign. Thank God.

Saturday Mar 31 10am:  Here is the most mentally active person I've known - she would not sit still in a room without doing 2 or 3 things at once. Watching TV, talking on cell phone and doing emails with one foot stroking the dog. But for hours yesterday she just lay there staring wide-eye at the ceiling. On seeing this I had to rush in to pat and stroke, talking about anything. Even Indonesian chatter is OK I told the maid, rather than letting her sadly idling.

Sunday Apr 1 2pm: So the maid gets off again and others get a chance to feed her. She sleeps to no end. Last night she did wake in response to JG's mad antics of cheering her up, by looking curiously at him. Once a while she wakes up with a sudden convulsion, then relaxes. Brain injury pathology?

Monday Apr 2 11am: Starting to turn her head to the right with her eyes closed. Perhaps the hemispheric response is becoming more balanced. The last EEG show a rather quiet left hemisphere.

Tuesday Apr 3 4pm: The PT put her on the ball today and gave a reversed sensation to her spine which usually sags on the bed. She groaned - at least she can feel the difference. At dinner she was able to look at the feeding canister, probably wondering for the first time what was she ingesting. Some degree of awareness is returning. But not yet to the point of watching TV, or smiling at family.

Maundy Thursday 11am: Yesterday I thought I saw her smiling at two close visiting friends. This morning I thought I saw sadness in her face, like she was crying when I tried to encourage her. We're both going through a very dry patch now.

Good Friday 11am: She must have been grieved by loneliness missing her friends and nothing to do. But a way opened. All the time I had the TV in the wrong place. Turning the bed around she is now able to look at it on her left and nearer to her. At least she can now occupy, even when doing therapy. That's one part of her back to normal. I'm thankful.

The 57mm left haematoma on the ctscan taken around 9.30pm, about 3.5 hours after the burst artery at 6pm, and not long after the relief craniotomy performed soon after admission at 7.30pm. How much her speech is impaired depends on how much damaged cells contain vocal memory.

Saturday Apr 7 8am: Must try getting the dogs on her left. She's a right-brain person for the being.

Easter Sunday noon: No she does not know the dogs. Somehow that part of her memory is lost. Later a dozen or so church members came to break bread with her. She stayed awake for the entire hour and sipped a little wine. That's a feat.

Monday Apr 9 9am: When I tried to encourage her, she cried. At least she show emotions now.

Tuesday Apr 10 10am: I heard it again last night. She uttered some sort of slurred sound when her friends came. Soft and whimpering. Keep climbing!

Wednesday Apr 11 9pm: Wednesdays are family dinners at her brother's. Tasted jello, durian ice-cream and chicken broth. Not impressed.

Thursday Apr 12 9pm: Thursdays are quiet for her and she slept most of the cool day. I am learning to take in both - moments of warm encouragement from friends, family and people surrounding, and times of dry sultry days where there's only she, me and God. But I believe she is starting to enjoy therapy on the ball.

Saturday Apr 14 8am: Not that I'm superstitious but nothing much happened on Friday the 13th, except she was again fascinated by toddlers like the grandnephews and nieces visiting from Boston. But this morning she spoke! They were slurs and it went on for a while. Starting to exercise her vocal cords, first time over 7 months. The difficult part is later when she'll have to learn basic words all over. But rejoice!

Monday Apr 16 11am: Like a see-saw the vocal jubilation on Saturday is alternated by a whole day of sleep hibernation on Sunday. Not even her best friends could stir her to recognition. Today is hard labor for therapy - stiff joints. That's another crevasse we have to cross - her motor skills. We have to climb the speech mountain and cross the motor ravine at the same time.

Wednesday Apr 18 11am: Last night we had a family dinner where Miranda met her 92-year mother again. For me to see both on their wheelchairs facing each other but not knowing, caused a gush of tears. She got her qualities of love and generosity from both parents. 8pm: Again those moments of anguish or pain appeared on her crying face that I could do nothing about. It could be a headache, gut problem or just coldness or discomfort that is not expressed. No one knows.

Why does God not open an avenue to cheer her when she is in such a distress? She was the cheerful one and a bold encourager in her youth when others were in distress. Talk to her schoolmates, netball playmates and others in her workplace where she is always helping, obliging friends and associates. Even when her father neared death she was positive. Why suffer the cheerful, generous and kind? Pray that God sends His guardian angel.

Friday Apr 20 11am: Nothing much happened Thursday, but this morning she swallowed a quarter glass of coke-flavored thickener after 2 hours therapy. That's progress. Maybe we will soon wean her off the nose feeder.

 Holding Strauss, with Sweetie and Pi, all dearly missed.

Sunday Apr 22 11am: No entry on days when she does nothing but sleep, like yesterday. I noticed when she had a good sleep the night before she'll tend to utter something, like this morning. The tendency to turn her head hard on her left is reducing - perhaps the left hemisphere is firing up more now?
Monday Apr 23 7pm: More alert today, allowing me to talk to her again, her eyes restful. She could turn her head to her friends, but still not knowing the environment.

Tuesday Apr 24 11am: So I found that her left eye was infected because of poor house-keeping - the eye-drops, though unopened was left around in un-sanitized conditions. I realized that care-givers must not only care for the sick but must also watch other helpers. At night we found crystals in the urine - probably from the sodium in the thickener.

Friday Apr 27 4pm: Her left eye got worse - not just because of infection but like most coma patients their brains do not blink the eyes as much, causing their cornea to dry out due to lack of lubricants. If this is not addressed she will slowly go blind. Thanks to her alert doctor friend another obstacle is to be overcome, hopefully.

Saturday Apr 28 4pm: Need to put swollen red left eye in a patch - cloudy cornea. Eye specialist says antibiotics drops and lubricant will help. I'm not becoming delusional, but must say that such help appear like angels to an ignoramus me.

Sunday Apr 29 8pm: Starting to utter something which I could not make out. Also sighing and soft cries. The left eye still looks bad.

Monday Apr 30 5pm: The good thing is her cries show that she's starting to express herself. The bad is it is so distressing to hear her travail.

Two are better than one - for if one falls the other will lift her up, but woe to him who falls alone. Again, if two lie together they get heat, but how can you be warm alone? And in adversity two can fight better - even better as a three-braided cord is not easily broken. (Ecclesiastes 4:9)

Wednesday May 2 3pm: Nothing much yesterday except the car broke. But this morning looking thru only the right eye she greeted me with a pleasing look - almost a smile. Despite her bad eye,  she can still be cheered.

Thursday May 3 10am: This time I had a good sleep - comforted that God is healing her. Her eye still sore is improving and therapy is keeping her limbs supple.

Friday May 4 7pm: She watches TV with her one eye. The left eye is improving, though swollen red.
Have mercy on me, O Lord, for I'm in trouble: mine eye is consumed with grief, yea, my soul and my belly. My life is now spent with grief and my years with sighing...I am forgotten for dead, like a broken vessel. But I trusted in Thee O Lord: I said, Thou art my God. My times are in Thine Hand... Oh how great is your goodness, to them that fear Thee...O love the Lord all ye saints for He preserves the faithful...be of good courage and He shall strengthen your heart, all that hope in the Lord. (Psalms 31:9 onwards)

Saturday May 5 8pm: Her almost 24 hour day of sleep is troubling. I've been told that a blocked shunt will have this result. She has been due for a neurological review with the doctors on the 17th. Her road to recovery seems to have hit an impasse.

Monday May 7 8am: Just when I was about to give up she gave me hope opening her eye. Yesterday I was told she cried out and moved her right side. We will pray that she consistently improves her speech and motor movements.

Wednesday May 9 7am: I gave up trying to have her open her eye the whole of yesterday. But this morning she did. So I take it that alternate days of sleep is her brain's routine for recovery. She also cries softly (which is a good sign), but I am not able to understand the words. We have also started her on an alternative Chinese medicine first prescribed by her rehab doctor last year.

She is still not able to recognize any of her faithful MGS visitors, shown in this 2004 photo. Miranda in front row (4th from left)

Friday May 11 7pm: More alert today than yesterday - maybe the Eastern medicine is starting its effect? At 8pm she opened her eye and allowed me a one-way chat with her. Still cannot understand her utterance.

Saturday May 12 8am: Found small amount crystals in urine, probably due to  the Chinese drug. Doctor stated it is minor, but the increased sleepiness is cause for concern. Stopped Amantidine as suggested while awaiting review this Thursday on her VP shunt. Left eye getting better, thank God.

Mothers' Day 10am: Last night I was exasperated trying to wake her to chat or read. Giving up I decided to spend time myself alone, reminiscing about the life we had. The memories - lots of it, flooded back - every place we went - restaurents, roads, parks, sit-outs. And the long conversations. Most poignant of all was the companionship - now gone. Of course she spend more than half our time with others like friends and family. They were the spices. Gone also is the memory bank, for now only, I hope. Everytime I needed to recall a name or event, or even a word or what we did, she would spew it out with little difficulty. More precious have became the moments all of us used to enjoy in life when they are gone.

Monday May 14 10am: After a lonely Mother's Day yesterday, she became cheerful again, opening her eyes to greet me. The alternative medicine seems to give more cognition since she is put off Amantidine. She's begun to utter sounds again during therapy, which is good, as well as getting good sleep and not passing crystals.

Tuesday May 15 9am: The skin infection (not uti ?) which started last night is more serious - causing the left thigh to swell as the surrounding tissues affected. Two possible causes - not cleaning properly and not changing diapers fast enough. Lesson learnt. No therapy for the moment.

Wednesday May 16 10am: Miranda has received so many merciful grace all her life, including doctor friends now looking after her eye and swollen groin. It's just that she's fallen into such a deep hole now that is taking so long to extricate her up to consciousness. Left eye getting better but mystery still surrounds why abscess starting in her left groin area without any external injury.

Thursday May 17 8am: Left eye still red and wet needs about 2 months of treatment. But she opened them today! Looks like we will have to visit this mountain again - her speech still muffled and incoherent. Pray that the review will be positive.

This post ends today. Next:  Mobility crevesse - challenging the limbs

Long Road to Cognitiveness

A rocky one as well. Cranioplasty and the VP shunt was performed on Miranda during the hospital review from Jan 18 to Feb 25. They purportedly give her the best medical chance of recovering the normal functions of her brain. Now it is up to her body and her Maker to get her out of the vegetative state. Other than prescribing Amantadine there are other options such as alternative (Chinese) medication or acupuncture. The later is forbidden on her torso and head to avoid the risk of perforating the shunt tubing. Physiotherapy is imperative, as she is currently put off baclofen which tends to reduce her wakefulness. But her wound from the shunt operation is still sore from her left skull to the peritoneal cavity. And we have to proceed with caution the handling of her stoma bag and the nearby shunt incision. From now the priority is to heighten her neural interaction with the surroundings. Her home is the ideal place. Visitors too. Thanks for walking this lonely road with us.

Sunday Feb 26 9am: Tests of cognitive-ness vary. Will she focus her eyes on your prompting? Is it relaxed and blinking? Will her eyes track you as you move and turn? Will she awake when someone enters the room and turn to you? Does her face respond to caring touch and caress? This morning as I entered she did the last two. But hardly repeatable. Of course positive cognitive-ness is reinforced by her motor skill which is virtually nil at the moment. Only objective way is to measure the brain cognitive signals - something not afforded to the hoi polloi.

At the foothills of Everest 1995, near Namche B (elevation 3500m)
Monday Feb 27 9am: Back to her usual bedside therapy and showers. Just praying her left thalamus heals somehow. No decent neurosurgeon worth his salt will ever touch the damaged thalamus.

Tuesday Feb 28 3.30am: Got up to swallow a pill and found her blown by the strong fan uncovered under the air-con - an opposite situation of Sunday, Feb 19. Had it not been for my bad tooth she'd have caught a chill. Am I being too harsh on the maid for her oversight, or was I just too particular?

Wednesday Feb 29 10.30am: Discovered a possible infection deep in her right ear, after months unattended. 1pm: Her joy is still being surrounded by her visiting friends and colleagues - I wish her smile returns.  7.30pm: Wheeled her to her brother's house to be surrounded by love. But her vegetative state prevents her love from effusing to all of them as before - especially the little ones she used to dote on. She has to re-learn her love all over when she comes to. What a tremendous loss that was in her left brain - the memory of her loved ones. Dogs too. Now I understand why they just walk past her.

Friday Mar 2 9am: It has been 6 months to yesterday when Miranda had the infarct to her left brain, leaving her in vegetative to minimally conscious state today. The sunny rays of March rolled over yesterday allowing her to soak in more vitamin D on the wheelchair than the pills she has daily. She also had sunny friends to interact. For this time I actually feel truly thankful and grateful, for all her contacts and friends who came at short notice to tend to her. Also everything has been amply provided for me. Her ear infection seems superficial when Dr. L came to peer into the canal. But have to watch the slight bulge to the tympanic membranes. Some friends had told me they tend to shun this blog because of the continued sadness. But today I hope cheer has arrived. Visitors tell me she seem to be more aware of their presence - her eyes intently fixed on their faces like a child's gaze. But she is a toddler again somewhat, having to re-learn to speak and move her limbs. These are the two major goals next 3 months.

Saturday Mar 3 9.30am: Everyday when I stand her beside the bed and do therapy on her she seems exhilarated when her neck muscles are massaged. You can even see pleasure in her eyes. Today I decided to see if she understands breathing in and out. I would tell her to breathe out and then squeeze her chest. Then tell her to breathe in while releasing the pressure. She seems to comply because I can hear air exhaling and inhaling. So perhaps she understood some cues after all?

Sunday Mar 4 1pm: A boring Sunday morning for her as she is usually found in church. And she is definitely not the lay-around type. But I had the entire bible read to her through the earpiece from a hand-phone. 4pm: Was so relieved to have visitors see her on the wheel chair, and also later on in the evening, praying for her.

Monday Mar 5 9pm: I was ecstatic when every spoon of coke I offered her she swallowed, sliver by sliver. And she responded to my wild encouragements. Later in the night she showed some awareness of the environment by turning her eyes to the door when someone enters - but only to the left. Minuscule - but still progress.

Tuesday Mar 6 5.30pm: She looks sad lying there nothing to do when she should be playing golf with me. But I should be happy that is her former self! So I constantly try to cheer her by patting her face and stroking her forehead. Her mouth would then open and close, but not even a groan is uttered. Precious are such interactions with visitors. Evening came and she had ice-cream - yes durian ice-cream, but ever so little as not to choke.

 Nice food - that's her spice of life. But seeing her friends enjoy food gives her greater pleasure.

Wednesday Mar 7 7am: Mentally it has taken me 6 months to get back to some sense of normality. I didn't know that. Better concentration span and longer, more peaceful mind. Today she looks only like a "shell" of her former self, I've always wondered unconsciously why happy, united people should one day separate.

"The Lord is good, all the time!", I used to sing the chorus ad nauseum in church. But the Goodness of God is most greatly seen outside the warm pews, in the malaise of poverty where missionaries toil, in remote, spartan hospitals where children starve and in the struggles of a suffering spirit where nary a pompously dressed religiosity huddle.

Thursday Mar 8 8pm: This morning she went into a spasm an hour after feeding and vomited. Physiotherapy was also difficult, her feet kept bending when standing. A difficult day. But she had comfort from evening visitors.

Saturday Mar 10 3pm: Was too busy doing errands for her yesterday. So now her funds are released to be spent on her welfare and I can sign contractual obligations on her behalf. But this morning I found to my chagrin that her stoma is bruised by the bag sticking too close to her raw skin. From the stains the maid must have missed her vomiting sometime in the night. Have to be vigilant and not depend too much on hired hands. Also had her wheelchair repaired yesterday for her tour of the neighbourhood. At 8pm she was restful and peaceful.

Sunday Mar 11 9pm: The maid is off today, so I have her to myself. Although her eyes are able to gaze at visitors I found out today that she has no visible signs of emotions on her face in all my interactions with her. My past attempts to make her smile or laugh failed. I've cried before her opened eyes various times. She just looked at me blankly.

Monday Mar 12 6pm: Sold her car today. An incurable sentimentalist, I took it out for a spin and patted it affectionately as it drives good. But Miranda is a pragmatist. If I were the sick one she in my place would have disposed of my car without much thought or sadness. 8pm: Wheeling her up the road she was surrounded with love from grand nieces and nephews. But she was inert as before.

Tuesday Mar 13 9am: Was filled with nostalgia today and to still have the memory to enjoy it! We met on a SAF (army) tennis court, married in Wisconsin, lived in Colorado and worked 30 years Singapore. We've walked long forest trails, climbed snowy mountains, journeyed over blue oceans and driven from West to the Eastern seaboard, chased by tornadoes and storms. In 30 years we travelled China North-West, Europe, Australia, climbed Nepal, lived in Japan, New York, Boston and made countless golf trips to Malaysia and Hong Kong. All these adventures making decisions, suffrage for each other.

You fill up my senses, like a night in the forest,
Like the mountains in Springtime, like a walk in the rain.
Like a storm in the desert, like a sleepy blue ocean.
You fill up my senses, come fill me again.

Come let me love you, and give my life to you.
Let me drawn in your laughter, let me die in your arms.
Let me lay down beside you, let me always be with you,
Come let me love you, come love me again!     - (Annie's song) - J Denver 1974

Wednesday Mar 14 Noon: Another rough morning of vomit. Has happened before while exercising standing. It is good that she can still swallow and not let it choke or infect her lungs. And she'll regard her visitors through her eyes when they come in. At dinner when she was again surrounded by family she did what to us was an astounding thing: She lifted her head off the wheelchair and turned to her right and back again to her left. Her eyes were looking darkly and movement was mechanical. But it must have been a great effort. First time.

Thursday Mar 15 10.30am: As we soaped her lifeless limbs flopping over this way and that in the shower the prospect of her ever to walk again hit me like a ton of bricks. The worst answer can be found by the neurosurgeon with his initial CT scans showing the massive haematoma in the left temporal lobe and the thalamus damage which modulates the motor control neurons' pathways. But the better answer is given by Jill in her "Stroke of Insight" where the right brain can learn functions of the left. Because of that hope we persisted in therapy ensuring the limb muscles are ready when one day the brain starts to signal it. Pray that the day comes soon. When visitors came at night chatting thinking that she was asleep she surprised us with a sudden look.

Boat off Mersing, West Malaysia ('80s) with sis-in-law and niece.

Friday Mar 16 8am: Today she will go for the healing service at 6.30pm. Pray that the Holy Spirit work on her as God wills. I've stumbled on her Bible reading notes and know that she's always grateful for good health as she tries to give as much of what blessings she has received.  8-10pm: Pastor Bill Johnson talked about the pervading presence of the Holy Spirit and His healing ministry when constantly hosted by believers. Like the biblical centurion's servant who was not in the thick of things (but later healed by the mere word of Christ) Miranda's stroke was not among the repertoire of healing invitations of Pastor Randy Clark. "This requires a miracle, not just a healing", was his comment as he prayed over Miranda at the end. She looked up at him like a child, then went home exhausted after the long meeting. God has His time.

Saturday Mar 17 8pm: For some strange reason Miranda slept a lot today - 11 of the 12 hours from 6 am. Everything else was normal - food and physiotherapy.  Perhaps the brain needed that for some unknown reason.

Sunday Mar 18 4pm: An uneventful day of more sleep. Next week we will work her on the exercise ball.

Monday Mar 19 4am: Miranda has become a night owl, sleeping mostly days and watchful at night. I chanced upon her so early in the morning to turn her as the maids don't turn her after midnight. I thought that the maids should have their sleep, but this had to change if she stays awake, needing attention. Yellowish urine - to watch for uti. Later in the evening Dr. L brought the test kit as well as a long lost friend.

Tuesday Mar 20 8am: So uti infection likely from the leukocyte urine test readings.  Also probably explains her continued sleepiness. Had a little scare last night from her blocked feeding tube with reddish fluid exp-orated for the pH test. After my amateurish attempts turning her and jiggling the tube the block was cleared for feeding.  Still, need to order something like antibiotics to stave off oncoming infection. No temperature yet. Thank God these obstacles to her recovery are temporary. Her good friend Dr. S came at noon and administered antibiotics as well as treating the excoriated skin around the stoma.

Wednesday Mar 21 11am: Today I must make a deliberate attempt to be thankful. This is one of the things she wanted me to do more. I must not be greedy for all good we have already received. All her friends meeting her needs and countless others praying daily for her, despite her seemingly insurmountable odds, unable even to scratch a bug off her arm. And people do read this blog. Let me make this a weekly thankful entry. In spite of our privation, there is still the goodness of God. Lest we forget.

Thursday Mar 22 9am: A friend said that at this stage of her struggles the most important is to keep up her fighting spirit and never let her lose the will to live. Whenever she's awake we encourage by telling her what we will be doing again. So at her wheelchair I took out her trusty golf set, polishing each in front of her, reminding her to be ready. She gave me an eyeful, then went to sleep.

Friday Mar 23: Got up at 2 am to meet my night owl. So I set the hand-phone player to Galatians and let the Word minister to her. Today we will change the Amantidine medication to the evening to see if she gets back her sleep cycle.

Saturday Mar 24 8am: So it worked. It took 8-9 hours for the insomniac effects of a 100mg Amantidine to wear off. Having it after her lunch restored her sleep cycle. But had another blocked Ryles tube again last night and this time it took more than a jiggle. Just 2 more days and the HNF (Home Nursing Foundation) nurse will be changing it after its 2-month life. Life marches on. Come mid-May and she is due for another review. By then she would have finished her course of Western medication and possibly start alternative medicine such as acupuncture and Chinese food supplement. Should we? Right now the journey leads to two obstacles: her swallowing/speech function and motor control.

Sunday Mar 25 8pm: Tried to cheer her up by pulling on the funny side of things. Only close family members and friends will take every opportunity to engage a comatose patient whenever they open their eyes - not hired hands. Realized how important this is for neural rehab. Miranda seems to respond by the look on her face. I can say today there is a very, very slow cognitive progress. Her limbs however are getting stiffer with increasing contractures. Have to work that harder as a price of giving up baclofen, which puts her to sleep. Tomorrow we will take a detour to deal with her dysphasia - feed and swallowing (and speech) when the HNF nurse comes.

<End of Post>  Next -  Speech Mountain

Review

Every stage of repair in a brain injury should improve the quality of life. After two months home convalescence Miranda has moved from vegetative state to frequent moments of wakefulness. But still non-communicative and immobile. Except her eyes - large, quizzing and sometimes transfixed left and subject to erratic movements (nystagmus). She is back in the hospital for a much needed review for what next. Physiologically she is in stable health, therapy has kept her tone well. The first of three issues is to restore the protection of her left brain against accidents and the cosmetic appearance of her face. We will deal with other brain pathologies like hydrocephalus and seizures or nystagmus after the cranioplasty. Secondly her lower intestines have to be exercised long term. This is thought to be a minor issue compared to urinary infection risk with the colostomy closure - as Miranda is still bed-bound and un-instructive. The final issue is neural rehab - the stimulation for normal brain function recovery. The brain should not lie idle for too long - she must exercise her thinking for which she is well-known in Singapore.

Thursday Jan 19 9am: In a neuro-repair ward the neurosurgeon is like the next best thing to God. After Miranda settled in and examined he ordered "the works" to establish her medical baselines after two months from last discharge. ECG, chest X-rays, CT-scans plus turning the wheels of supporting PTs, OTs, ST, dietician, etc. Then the other senior consultants had their updates as well discussing the way forward. Suddenly there is info-overload again.

Maybe we shall fly again. When the left engine is restored.
 
Friday Jan 20 5pm: The hospital is really a likely place to fall sick. For 2 months Miranda was free of fever. Just 2 nights in the ward and she had a 38C temperature. But she looked restful after a half-hour full standing therapy. Her eyes so full and large when looking at visitors that it is almost disconcerting.

Saturday Jan 21 noon: Her swallowing skills still primitive by ST review, so back to feeding tube. Its been 2 months. I dread the insertion of a new one - she shudders and have spasms over it. But was she attempting to recognize old friends TC and EK by looking intently?

Lunar New Year Eve 9am: The family who is sure to surround her is her main pre-occupation in life. Others are her dogs and her job, in that order. But she still have to fight the 38C fever lingering in the hospital air. (9pm) So these are the things to pray about: the cranioplasty is scheduled for Wednesday and everything has to be right - no fever the night before, no undue swelling (hydrocephalus) or csf (cranial spinal fluid) depletion, the tests must all pass (synecten is a adrenalin response test). Not all test results have come in, so the jury is still out for the Review.

Lunar New Year 7.30am: Had to have special dispensation from security to come in so early but the hospital is quiet and parking ample. Her eyes were doleful - anyone must miss home if you have to spend New Year's eve alone. So I cheered her with her favorite iPod. She must have missed earpiece music for months! 3pm: Friends, nieces and nephews came a visiting replete with mandarins. I know her enough to tell if she's pleased - mouth closed with a little bit of her lower teeth showing. This time as at previous years her generous heart would have sent ang-pows flying. But just a twitch of her fingers alone would have brought joy today.

Tuesday Jan 24 1pm: Adrenalin stress test ok, but urine suggests infection (white blood cells). Temperature down but needs an infection resistance test. Running out of good veins. Otherwise she should be ship-shaped to sail into cranioplasty tomorrow.

Wednesday Jan 25 3pm: Came out of surgery 2pm after 6 hours. I was a bundle of nerves. But she was alert and could even blink coming out of sedation. Now she has a fuller face and when I shower her there is less fear of injuring her brain, the jelly-like matter under her flap of skin. Thank God there is another hurdle passed...but we aren't fully out yet. Next few days have to watch infection or bleeding and the skin has to be anaerobically sealed. But I have to tell you of yet another greater hurdle ahead...

Thursday Jan 26 10am: "No it is not infection", the MO said referring to Miranda's left face, bloated beyond recognition. "But it is going to get worse before it gets better." The next several days is crucial that she is not unduly exposed, so visitors, thanks for the care. It will be about a week before we take the next step in the review. The doctors are deliberating.

Friday Jan 27 8am: There's still blood on the dressing. Maybe visitors should stay away next 2 days. Till Sunday. Her tone is still good from light therapy. She is still immobile and she could only sigh. She's starting to utter some sounds (probably post-operative pain) but incoherent.

Saturday Jan 28 1pm: This morning we gave her the vertical tolerance exercise standing up as well as therapy missed since Wednesday's surgery. Then after her showers she looked contented and her swelling has subsided. Urine sample will determine if infection phase is passed. Visitors welcome again with usual precautions.

Miranda (back row, extreme left) featured in Australian newspapers in 1967 Girls World Basketball Competition. To enlarge and read the newsprint left-click the picture (or any picture in the blog, depending on your browser). Otherwise right-click and save into your folder, then use your favorite photo-viewer.

Sunday Jan 29 8am: She's sleepy from painkillers. Will be put on amantadine Monday, a "recovery" drug, with several side-effects. Urine clear now. At noon met with the neurosurgeon. It will take another week to see if her brain develops hydrocephalus, needing further surgery to drain the csf (last Sunday's entry) through a shunt, down the neck into the abdomen. Pray that it need not be as the colostomy closure can infect the buried tubing. Another issue is what next? If she remains in persistent vegetative state (now)for a long time with periods of wakefulness, something could be done to wake her up. But the proposed method (called DSC) is very invasive - laminatomy is the implanting of an electrode into her spinal cord to stimulate cortical regions that promotes cerebral blood flow, and hopefully consciousness from the damaged thalamus in her case. It is a long shot with success rate about 38%. It might even be a shotgun method as no one knows the appropriate spectral shape for the treatment signal. This is the hurdle I mentioned on Wednesday. Even if she responds to this extensive medical trial, she remains mostly quadriplegic. She would then know but cannot do anything or even speak about it. Then what?

From whence cometh my strength? My flesh and my heart faileth: but God is the strength of my heart and my portion forever. They that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary, they shall walk, not faint. Ps 73:26, Isaiah 40:31

Monday Jan 30 4pm: This morning she was back to her therapy routine, as well as tilt-table at 60 degrees. She seems to be more alert after the cranioplasty when she awakes, as predicted by NS, scanning at visitors. Amantadine dosage has been started to see if she improves further.

Tuesday Jan 31 11am: Amantadine shot her BP to 162/99, even when standing therapy. Today I realized that for exactly 31 years of marriage to this day she was the confidant encourager. How things can reverse so quickly!

Wednesday Feb 1 11am: BP stable with a tilt table set at 70 degrees. 2pm: She looked at Prof G, the acupuncturist assessing her who concluded possibly treating her. Don't want to sound like clutching at straws but here is a non-invasive avenue opened. But I'll like to wait until after the current modern medicine has taken its course.

Thursday Feb 2 3pm: MO broached the bad news that Miranda's scans show onset of hydrocephalus thus requiring the dreaded shunt as I described Sunday 29th. Why do the bad blows keep coming when it looks like she's looking better? The bad news come in pairs. The advice is to either close the colostomy, and do the shunt so that it will not seed any infection to the tubing or forever live with the stoma bag once the shunt is in place and needed. Looking back the colostomy which we thought came about as a medical oversight turned out to be a blessing in managing her stools. Now I would like to see it closed willy-nilly. And it will buy me some time to watch the hydrocephalus further. Pray that we can still avoid a shunt.

Friday Feb 3 10am: Spoke to NS. Would require a lumbar puncture pressure test first before shunt. Spoke to previous colorectal surgeon. Risk of infecting shunt during closure is there but closure can still be attempted with shunt in place. Jury still out. 4pm: But no matter how distressed I must not let that overshadow the fact that she stood a full hour today, half of it on a tilt of 40 to 80 degrees, BP notwithstanding. Sleeping through it must be due partly to hydrocephalus.

Saturday Feb 4 1pm: Like to see her sleeping contented after therapy and shower, oblivious of what medical challenges ahead. Her stitches are coming off at 2pm. Poor girl, her body has taken so many insults already - how many more procedures can she take? I'm actually looking forward to taking her home, comatose or not.

Sunday Feb 5 10am: The staff nurse wanted to introduce me to another patient similar to Miranda in the next bed but had a shunt recently. Seems to have significant progress but caveat is that all patients will have different responses, not matter how similar the symptoms. 1pm: Met NS and looks like the shunt is needed, but he will drain off some cs fluid during the lumbar puncture (LP) tomorrow morning. This is the 4th instance when what I wished (and prayed) for is denied: craniotomy, tracheostomy, colostomy and now the ventricular shunt. But I accept that often what we wish for may not be best. All told, she has already undergone 6 with another two operations impending.

 Serangoon Gdns Sports Club Basket-Ball team. Inter-constituency tournament 1966. Miranda is the lanky girl at the front-row, right

Monday Feb 6 Noon: LP is 13.5mm, normal 4-10mm. I need a break. She looks good, sleeping like a child. But from 7.30 to 10.30pm she stayed awake. So was it due to LP draining 31cc of csf? She was also on Amantadine. So will it be the shunt or Amantadine? Will decide tomorrow after observing her sleep/wake cycle.

Tuesday Feb 7 noon: RD (rehab doctor) suggested 3months ago to try a food supplement (called Neuro-Aid) that purportedly helps restore neurons. So now a three-prong approach: Amantadine, Neuro-aid or the invasive ventricular shunt which limits colostomy closure. I'm confused. I long to see her safely at home without having to rush back to hospital for an invasive shunt.

Thursday Feb 9 12.30pm: Had a brownout Tuesday exhausted by lack of sleep deciding what to do. There was a conflict on medication and treatment from doctors but now resolved. Also nurse-maid issues. All clear today: We will proceed with closing the stoma (colostomy) if the risk of infecting the shunt later is high, at the price of managing stools in the diapers. After a couple of weeks complete recovery, the ventricular shunt to be inserted as decided by neurosurgeon. Rehab medicine can wait till surgery is settled, except for tone therapy.

Friday Feb 10 noon: Her wakeful hours now almost normal with baclofen almost tailed off.

Saturday Feb 11 4pm: Again the colorectal surgeons baulk at closing a comatose patient's stoma with or without a shunt. Meanwhile Miranda is steaming along, unable to tell her toilet needs, leaving us caregivers stymied as to when her intestinal function be normal again. So now we wait and pray, hoping that she doesn't need a shunt after all and hoping her hydrocephalus stabilizes to cognitive recovery at home.

Sunday Feb 12 7am: So the procedural deadlock: If shunt in place colostomy couldn't close. Before shunting surgeons fear closing an immobile colostomy patient. Living forever with a buried shunt is acceptable, but rather not living forever with a bag sticking out of your abdomen. Lord help her dilemma! Pray that she doesn't need a shunt after all. Watch 2 weeks is the surgeon's position.

Monday Feb 13 8am: The damaged irrigation canals of her brain warrants a shunt, so something must give. To prevent the enlarged ventricles from hurting her brain further Miranda stands the prospect of permanently living with a stoma bag to handle her stools. But when she recovers sufficiently to request normal toilet functions we shall return to this issue. The shunt procedure, which gives her a further 5-10% of recovery may be scheduled on Wednesday. A difficult past week - had to fight a hurting root canal while reliving the dim prospect of her getting better soon. Been praying harder.

Valentine's Day 12.30pm: The usual risks of infection, bleeding, kinks and blockages were explained before the shunt procedure tomorrow at 0730am. It is true that more pain goes to the loving hearts than the sick and unconscious. To survive the onslaught transferred from loved ones, caregivers must find some semblance of sanity in all this. This is her portion in life. We have our own. Struggles in the future as we age are common denominators to all humankind's frailty.

Wednesday Feb 15 2pm: Arrived at 1 pm to an empty room. I'm not stout-hearted enough to wait 6 hours in the ward and will tend to swoon at seeing her in blood or plasters. But at 1.45 she was wheeled to recovery room. At 2 she was moved to her room, eyes wide open. Strong girl! But belching air and groaning softly. The nurse finding from BP she's probably in pain, administered codeine. Will take about 2 weeks to heal completely.

Thursday Feb 16 11am: She has stopped the painful groans, eyes more peaceful. I don't think her body can face another knife. But more easily awakened now, even noises will. Have to be extremely careful handling her stoma bag - any infection at the shunt area now could be fatal. Also the operation may traumatize other areas such as the feeding tube region.

Friday Feb 17 11am: Came from the dental center to see her focussed eyes scanning. She does looked conscious. Showed her pictures from this blog but she doesn't seem to recollect. But eyes blinking and appeared to be thinking(?).

Miranda (2nd in line) is not known to rest on her laurels. Her mother once said she threw out cabinet full of trophies to make room for better ones.

Saturday Feb 18 8am: Last week HR of A*Star came to discuss Miranda's future. I don't have to put my nose or ears to the ground to know what's coming. The next time she gets admitted to rehab we will probably go to B1/B2 beds, which are more available. At 4pm more visitors came to cheer her. She could look across the room when others converse but whether she understood the exchange is unknown.

The most prestigious award in September 2009 was the Inaugural President's Science and Technology Medal. Earlier in that year she was admitted to the US National Academy of Engineering. The number of Singaporeans admitted there as Foreign Associates can hardly be counted on one hand. But can she count? Now?

Sunday Feb 19 7.30am: Yesterday she was again left sweating under covers with the aircon off and last night she developed a fever of 38.5, but this morning subsided. Came to the conclusion that one cannot be satisfied caring for a comatose patient with a hired hand.  There must be some supervision from a loved one - someone who can read the anguish. Today with her family we should break bread.

Monday Feb 20 8am: So the conclusions from the Review are:
1) Miranda is not yet out of the vegetative state, she might show more wakefulness but she is not conscious to be aware of surroundings or to recognise or track personal interactions. Rarely takes less than a year to be out of such conditions.
2) Surgically everything has been done neurologically to give her the best chance to recover - the cranioplasty and the shunt are the last hurdles.
3) Neural rehab will still depend on her degree of cognitiveness, now low.
4) Physiologically she is in reasonable health, with continuing therapeutic care needed in her total lack of motor control as well as her limited swallowing capability.

"You will not be tested beyond your capability to bear, everyone will at sometime face the trials of severe debility occurring in one or more family members. But God is faithful, that when you are stressed beyond breaking point, He will make a way for you, so that you may be able to come out of it." I Corinthians 10:13 (IMOT)

Tuesday Feb 21 12.30pm: This is probably the 10th CT scan she had. Results came back showing her ventricles have shrunken, the VP shunt has been working. Barring any more obstacles she should be fit to go home - after the sutures come off Saturday. Still thinking of the review yesterday I don't know to laugh or cry. Praise God! The most reliable indication of any prognosis is her cognitive progress, now out of the doctors' hands.

Wednesday Feb 22 9.30am: Some visitors reported she can respond to words or actions by turning her head or eyes but verbally she could only slur or groan. Still a baby-step considering she was totally uncommunicative. The staples on her cranioplasty came off nicely today.

Thursday Feb 23 4pm: Last night a temperature spike reminded me of hospital infection. She wakes up from midnight to 3 am, but sleeps normally through the night. Easily aroused at day, but still unable to recognize even her closest friends. The latest CT scan again confirms left thalamus damage. Once a while the garish blank look left with large eyeballs returns.

Friday Feb 24 8pm: Miranda will be discharged tomorrow around 1pm. Fighting the effects of a cracked tooth, a thought just came to me about not being crushed by her prognosis:  I cannot change her back to what she was - it is not within my power to do any such thing. But I can change myself. All the things she had wished for me to be a better person - I can do. I want this for her. Though probably lost in her now, we've been together long enough to know what kind of person she wants me to be. Reminds me of the little boy who cried - "Get well mummy! I promise to be better..."

Saturday Feb 25 11am: More stitches came off and careful instructions on shunt cleanliness. Miranda now yawns with a groan and probably senses home's safer air. Thanks for visiting Miranda on this blog post. Except for "virus" cyberspace sure beats germs and bacteria.

< End of post - next post "Long Road" >

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[FallenPillar.wordpress.com ]. 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

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