Hope

"Faith is the substance of things hoped for - the evidence of things not seen."

Miranda's recovery seemed to have plateaued. Around the first week of September 2011 when I sat distraught and confused in the ICU the neurosurgeon already predicted so. He said that most coma patients from ruptured brain aneurysms either recover consciousness in the first 2 to 3 weeks or hardly at all at 10% chance. The stories of people getting up suddenly from coma years after lying unconscious are mere sensational news stories, he said, and had never been witnessed by him. In the past week, some 14 months after her cranial surgery, Miranda, still unaware of her surroundings could only groan and sigh. Yesterday she tried to sit up from her wheelchair and turned her head, her right eyelid quivering, looking virtually at nothing. I feared she was about to have another spasm or fit. After she calmed down I was having to think deeply what all these mean. Is there no more progress? Will she be bedridden the rest of her life, with a healthy bodily "shell" and nothing much else? What if she outlives me, as caregiver getting older and weaker tending to her needs? One day I may not be able to lift her as easily. What about my needs? We have no children - only 5 dogs reaching the end of their lifespan. Just hoping things can turn for the better before they get worse. Besides hoping, I may have to make long-term plans. And also get a life!

Monday Nov 26 10am: Having had a fair night's sleep she stood well on her feet this morning, supported of course. Also gave us an affectionate look. Hoping she'll prove the neurosurgeon wrong.

Thursday Nov 29 2pm: Nothing of consequence this week. Christmas carols over the air stabbed me with nostalgia and deep sadness - that she would not be doing what we usually do at this time of the year. Maybe it will ring a bell in her.

Saturday Dec 1 8pm: This morning her eyes fixed on mine sadly, as if saying to please help her out of her state. But I'm not God. Then at 4pm her right arm moved slightly. So I said loudly for her to squeeze my hand. After some coaxing she did, but I'm not sure whether it was volitional or just tone.

Monday Dec 3 11am: On Friday her nystagmus returned. So badly it is bizarre. Like the electronics gone haywire behind the eyes of a bedraggled doll. Today she slept well, unlike me.

Thursday Dec 6 5pm: For 3 days now her tone was bad - stiffened limbs come and go. And panting. But her sleep was regular. The words of unbelief scream at me:

If God does not want to heal her why keep her alive to torment me? If she has her left brain she wouldn't want to live like a zombie.  She almost died on the day of her stroke. Then why for the love of her keep her in this state? And if she does not recover and does not survive later there's the pain of losing her again after all the care. What is the purpose of all this?

Sunday  Dec 9 2pm: Waited for 3 days to bring better cheer but little came. Her right side tone remains stiff and her will to go on needs a boost. Maybe her brain is fighting to get back her right motor response.

Monday Dec 10 8am: Last night she recovered some sleep and hence this morning some sanity returned. Hoping her limbs remain soft.

Thursday Dec 13 4pm: A bit more cheerful this morning. I'm slowly getting used to not feeling sad when not communicating to her like a normal person. She is after all still in coma.

Sunday Dec 16 10am: Her right limbs continue with stiffness, but I must soldier on - perhaps her left brain is fighting. This morning had some difficulty to lift her for the bath - has she gained weight or I've lost strength?

Wednesday Dec 19 4pm: 3 days of sleepless nights and today when she's recovered her sleep I thought I recognized her when our eyes met. Still fighting her right-side tone.

Saturday Dec 22 6pm: Observing her last 3 days I want to make an entry to say that it appears she's on the mend, because her eyes are more natural and she's been more vocal - not talking but sighs. But I fear to be disappointed again. It will be nice if she can smile or even look comfortable but I may be asking too much for Yuletide cheer.

Christmas Day 9pm: I kept reminding her to the point of being comical. Hey its Christmas - what are we doing today! Maybe its my imagination but I thought she could not resist a laugh. Have decided to give her Keppra today to reduce the tone and spasm. It worked - at the cost of sleepiness.

Saturday 29 Dec 9pm: Life must be really boring now for such an active mind of hers before the stroke. She now looks normal - eyes focused - it is hard to tell Miranda's real condition thru the blog - you'll have to see her yourself. She will not turn her head or move her eyes to your call although her hearing is acute - I know because her fingers twitch at sound as much as a clink in the room. And if you move into her view her eyes will focus with no hint of recognition or emotion. She can see you talking but there is no interaction or feedback. She may move her mouth but not utter a word. Has she lost the necessary database in her brain?

New Years Eve 11am: So I tried to cheer her by reminding her what we normally do at NY - her eyes seemed to lack life and will to fight. Maybe because she was watching TV whole night? Here's hoping that next year may be better. Have a safe one.

From www.planetware.com/i/photo

<End of Post>

Next: Endurance

Shell

I was spared this emptiness until now.  The first 30 of my 63 years to this day was without her. Then thirty so years of mirth and life. And God allowed her to be taken away. In one fell swoop the person of Miranda was gone. She has yet to recover the mid-brain, and the left dent appears as deep. Today I have only one hope - that in her place God has given me a Comforter for a soul-mate. A far better comforter now than her personality or "soul" as some might say. This thought helps me survive day by day, taking care of her body and maybe nourishing her "soul". In her place is the belief God comforted me, assuring of care, protection and love for both of us. I pursue this daily. That is how I try to have complete rest in mind and sleep. Some may say I've gone crazy or into a state of denial. But God's rest should be far more perfect than resting in an earthly union with a life partner. God has given me the pleasure of her life, and now in her place I hope, given me something far more. This should be my strength and purpose to go on living, taking care of the "shell" as  I had avowed to do. It may cost me health-wise, but illness and calamity does not spare many. I have received bountiful joy from the healthy Miranda so how can I run from this task? Also the pleasure of returning love and care of someone special and dear.

10am: She slept last night and more responsive today, despite still unaware. But we should not give up hope of improvement.  "The Lord is good to those whose hope is in him, to the one who seeks him." Lam 3:25

Monday Oct 15 10am: While I'm still filled with deep sorrow and loneliness she slept well and focused her eyes on me this morning.

Wednesday Oct 17 2pm:  Had this dream in November last year which I'm not sure is foreboding or augur well. I saw a large crowd of people, mostly middle-age and young ladies coming down a round stairway, all wearing white flowing robes. Seemed like they were ending a function and heading home. So I asked one why. She said that now Miranda's suffering is over, it is time to leave.

"One has no power to make another live again, once dead.
And one has no right to wish another dead once she is made alive or half alive.
But God has both to take away or heal completely."

Friday Oct 19 noon: Today she could turn her head a little compared to zombie-like yesterday. Sometimes she would utter a cry of frustration.

From Psalm 39: 4-9
Lord, make me to know my end, and the measure of my days, what it is: that I may know how frail I am. Behold, you have made my days as an hand-breadth; and my age is as nothing before thee: verily every man at his best state is altogether vanity. Surely every man walks in vain: surely they are disquieted in vain: he heaps up riches, and knows not who shall gather them.
And now, Lord, what wait I for? my hope is in thee.
Deliver me from all my transgressions: make me not the reproach of the foolish.
I was dumb, I opened not my mouth; because you have done it.
Remove your stroke away from me: I am consumed by the blow of your hand.

Sunday Oct 21 11am: With normal sleep cycle she did her exercise well. But her awareness is minimal, head locked left. Need to pray for recovery of the mid-brain damaged thalamus. The photo will help her overseas friends pray about it. [ The photo has been removed since the subject is unable to give consent]

 This top view was first sent to the neurosurgeon (NS) to access redness of her infection on 19 Sep 2012.[ The photo has been removed since the subject is unable to give consent]

Monday Oct 22 11 am: As she focused on me I told her tearfully that the reason she's what she is today is because of the 10% chance in hope that God will restore her completely.

Wednesday Oct 24 4pm: When her normal sleep cycle returns like last night she becomes more aware of visitors. Other than the mid-brain and left lobe her body seems healthy - sometimes I do wonder whether she will outlive me because I used to have more medical issues than her. It is in times like these that one asks the question deep inside all of us:  
What do I want to do with the rest of my life?

Thank God that the redness infection have subsided since this photo was taken for the NS. For overseas friends who have yet to see her her hair has started to grow over the stitches. This is the first close-up of her ever since her stroke.

Friday Oct 26 8pm: When I greeted her her eyes tracked me on the left.  A small mercy indeed. So even as I worked as hard as possible to get her attention and engage her mind I could not acquit myself of the guilt for not spending time enough with her when she was healthy.

Sunday Oct 28 11am: Tried again to get her to track me but was greeted with a wide stare this time, looking left at nothing. Such vacillations are frustrating.

Tuesday Oct 30 2pm: This stage of her recovery would benefit from personal interaction, because her eyes are more focused.

She has been called a terrific person. Let me share what is it like to live near the fire. In all points she's more likeable than myself. Everyone lauds her openness and generosity. Acutely aware of the feelings of everyone, she would restrain my many outbursts each time I insist on my rights. However she willingly argues for the truth. But Miranda has her favorite persons. She's enamored by babies and children as her young Institute mothers will profess. And her generosity and altruism is infectious to a fault. Once we were crossing the bridge at HK's posh Causeway Bay, the walkway littered with beggars. Pressing a fistful of dollars into my hand she insisted me, a consummate saver, to practice giving.

Thursday Nov 1 10am: Hoping to see a change for the better today I was disappointed. She's back to her inert self, unresponsive to my greetings. I think this week's break from the blog would be good.

Thursday Nov 8 8am: Came back from HK break but she's still inert. It was to be our annual vacation, and probably now my last. Memories of her linger, favorite golf holes, idyllic landscapes, and when it came to food Miranda sparkled. We reveled especially on the delectable roadside fare which Miranda will insist everybody tries. This time I became somewhat disoriented, missing her indelible presence and sense of safety. I must not become a lost puppy.

Friday Nov 9 1pm: Today her eyes could connect mine and I could talk to her. But no way of getting acknowledgment of her understanding. Her eyes also follow visitors a little. Pray that it continues to improve.

Sunday Nov 11 8pm: Today she is able to focus briefly as I talked and even occasionally gave a sigh of heaviness. But that is all - her awareness of the environment is as before - minimal. She is also currently being treated for signs of UTI (urinary tract infection).

Tuesday Nov 13 5pm: UTI has ebbed, thank God. But my efforts to cheer her to consciousness still unrequited.

Friday Nov 16 11am: Today she stood solidly on her feet as I held her on our usual standing physio. But her brain is still asleep, unaware of what we say to her. I'm starting to feel that it is status permanent. How could a brilliant scientist be reduced to this zombie in a single stroke, I still wonder...

Sunday Nov 18 11am:
When everything is tried, every path forked,
Every visitor moved on, every well-wisher said their last,
Every prognosis of medical care as it is expected,
All things done as it could be done,
Yet the stroke has occurred and the brain damaged:
There is nothing left but hope. And prayer.

Wednesday Nov 21 8am: "Durians are dropping by the roadside!" , as I tried cheering her when she awoke. Defying ST's instruction even stole her several sips of coke which she is famously known to have such affinity for. Eyes brightened at the taste of her favorite brew they focused intensely on me as I talked.

<End of Post> Next - "Hope"

Firing thru the lesions

It would be almost a week to the year in coma. It is hard to classify what stage of unconsciousness Miranda is now. For the past year she had to excruciatingly and painstakingly pull herself out of it. All hope of seeing her normal again was hanging on a thread. It still is - and daily is a battle of sorts. After the seizure suffered last month her eyes seem to be more focused when she is fully awake, a condition more appropriately termed "minimally conscious state" (MCS). The jarring truth about the brain trying to "wake up" is that the left brain is left scarred by the stroke. Dead tissues revealed by contrast CT-scan somehow will hamper the normal thought processes we all take for granted. Seizures are traumatic - even to watch. The synaptic firing in a thought process is still not entirely understood in terms of normal bodily behavior, but a guess is that the firing sequence cannot complete as it hits a damaged axon, destabilizing the other neuron processes of the entire brain. The neuron network collapse is grossly term a seizure or convulsion suffered by many stroke victims. But the recovery process must continue despite the trauma. Somehow the brain must find a way to heal...the trauma of seizures is like her rite of passage.

10am: Not since her 64 years to this day is Miranda helpless as a newborn babe. She made her best achievements in perfect health and that include bending backwards for friends she liked. It just takes a leaky brain vessel to take all that vitality away. Like a debt waiting to be paid. The brain controls most of the body - maybe now is a good time to revisit learning to talk and motor control. Her dear Japanese friends would say to her - Miranda, Ganbatte!

    

When I get older, losing my hair, many years from now
Will you still be sending me a valentine, birthday greetings, bottle of wine?
If I'd been out 'til quarter to three, would you lock the door?
Will you still need me, will you still feed me when I'm sixty-four?

You'll be older too
Ah, and if you say the word, I could stay with you

I could be handy, mending a fuse when your lights have gone
You can knit a sweater by the fireside, Sunday mornings, go for a ride
Doing the garden, digging the weeds, who could ask for more?
Will you still need me, will you still feed me when I'm sixty-four?

Send me a postcard, drop me a line stating point of view
Indicate precisely what you mean to say, yours sincerely wasting away
Give me your answer, fill in a form, mine forever more
Will you still need me, will you still feed me when I'm sixty-four?

[From: http://www.elyrics.net/read/b/beatles-lyrics/when-i_m-64-lyrics.html]

Sunday 26 Aug 11am: She looked pleased at her party last night surrounded by friends day and night. Some even think they saw a hint of a smile. Her boggy temple continues to mystify. And I must keep my cough away from her.

Monday 27 Aug 10am: The boggy bubble burst. Neurosurgeon (NS) saw her and readmitted to the hospital for fear of infection. But there was shortage of beds so now sharing with 4 other sick people coughing and wheezing away. Fear of infection? Oh Lord!

Tuesday 28 Aug 7.30am: The decision was made by the NS last night after observing skin breakdown on her forehead. As this is written the operation to remove her implant is ongoing. Low grade infection discharge to be cleaned thoroughly. Miranda may have to live the rest of her life with a sunken skull. Pray God protect her even now. And the strength to face this setback.
4pm: Came out of surgery breathing heavily, eyes opened, trying to look at me. I saw thru them, with the puffed-up face a brave girl. A pretty brave girl.

Birthday: The first photo since her stroke (sorry, from a cellphone). Her face is now different again, since her implant has been removed.

Thursday 30 Aug 8am: Doctors have identified the bug as the SA type and now testing whether it is MRSA or MSSA. Pray that it is not the resistant MRSA. They planned to keep her on intravenous antibiotics for 2 weeks in the hospital. Hate to think of those inserts in her wrists. But yesterday and today her eyes were opened large, and can focus although her left eye remains swollen.

Saturday 1 Sep 8am: One year has passed. She's still not ambulatory nor communicative. But her swollen eye has subsided and focus on her left. The good news, thank God, is the bug is identified as MSSA, more sensitive to antibiotics. If her scar heals well the doctors plan to release her home in 2 weeks. Can hardly wait.

Sunday 2 Sep 10am: She's awake like most of yesterday but interrupted rest last night. Me too, but I'm getting better, having to unwind the tensed week. Today is a time for talking & reading to her. Pray that she coughs and clears her throat better without anguish. It seems to grieve her all the time.

Monday 3 Sep 9am: When she greeted me thru large open eyes I had a rush of tears as I beheld her dented skull. The NSurgeon did mentioned that the atrophied brain does recover a little. Pray that it will recover, like the last time, or even more. Have to also ensure no chest congestion causing those grievous gagging. Now she's cleared of phlegm with throat medication, thank God. Will quarantine myself for next days - don't want to pass her another flu bug.

Wednesday 5 Sep 8am: Resting (for me). Now almost restored from a silent mental break-down last week. Have to stay strong for her, knowing that if she has her senses back she will want me to do the same.

Thursday 6 Sept 8am: Lord, have mercy on us as we seek to strengthen each other, everyday ministering in mental and physical restoration, as a couple or as a family of friends.

Saturday 8 Sep 8am: As I bade goodbye last night her eyes followed me from the bed. She's lacking the usual physiotherapy that we gave at home because her BP tends to drop due to surgery. And I was also indisposed. I'm fighting a mental and physical gloom to get back to cheering her.

Sunday 9 Sep 7am: So the intravenous run of  cephazolin and vancomycin will end Tuesday. She gets occasional spasms of wakefulness, eyes staring wide. But her head is no more locked to her left, although I wish that the left skull is fuller. 6pm: God is kind to me today. From the changing room attendant, golf caddy to the salesperson at the club, everyone has a kind word of encouragement for Miranda. Helps me think out of the gloom of losing such a vibrant, high-energy person in one single stroke.

Tuesday 11 Sep 8am: Going home at noon. Not one more minute in an infection-prone hospital. She's got a urinary tract infection (UTI) and a concern now is that she might have difficulty emptying her bladder. So I brought home a catheter set so her doctor friends could help out in that eventuality. At 3pm the urine came - thank God another problem overcame.

Thursday 13 Sep 10am: I can see she still enjoys a shower at her own home. Still praying her left skull dent recovers and her memory better. I'm getting help from all her friends for the little things to be done. Thanks also for bringing the Comforter to my side thru your prayers, the lonely hours aren't so gloomy.

Friday 14 Sep 10am: Everything seems so difficult - the physio, shower, bed management without the safety of a skull cover. Have to move carefully to avoid abrasion or it may cause further infection. The stitches are healing but what an extensive cut. The NS have reduced shunt flow in order to reduce the dent in the skull. UTI seems to be over but excising of her phlegm still a problem. Pray that it will improve with the brain's recovery. Last night a visiting friend has given me tremendous help mentally and spiritually. It looks like I might survive this, for now.

Sunday 16 Sep 1pm: She enjoys having a face massage, especially around her dented skull. But she still has problems coughing out her phlegm (while I have problems digesting). I'm making it a habit to talk to her slowly about everyday matters. But it gets tiresome after only 15 minutes of one-way conversation. But it is the privilege of having her hear me out and enjoying her presence. Brain hemorrhages are known to have taken people away suddenly. I'm thankful for still having whatever I have of her.

 Always helping out, I've seen her in the kitchen even during student days.

Tuesday Sep 18 11am: I feel rested today because last night I trusted that God will heal her somehow. The joy of greeting her returned. Every time I looked at her face, the left side occluded by the sunken skull I twinge. Then I realized that for 8 months the cranioplasty had camouflaged it - since the day of her stroke it has always been like it after the major surgery to save her. The infection above the dura never worsen her brain, thank God.

Thursday Sep 20 2pm: More vocal yesterday and today, but nothing intelligible. Her stitches are healing nicely and hair starting to grow again. But the prayer is to please restore her left brain!

Lift up, O lift up your face and countenance
For only God can order life, death, sickness or health
Nothing I do can turn back the clock, or wish them away
And there is only that much I can do
 
So turn your heavy eyes upwards
Looking down only drags me lower
Look up and above to sky and sunshine
Lifting out of my gloom and weariness

Saturday Sep 22 noon: Eat, sleep and walk - the ingredients of mental health. She slept most of Friday and nothing much last night. Need to catch up myself. But her physio is sustained to clear the chest congestion and muscle tone. How precious are friends! Their visits take the sheer tedium of one-way conversations out of my confinement.

Monday Sep 24 noon: Nothing to report - the nadir of our lives makes us hold even tighter onto the sleeves of God. Pray that her utterances can become more meaningful rather than one of despair. It will be when she comes out of coma.

Wednesday Sep 26 1pm: Queer that she's not needing as much sleep as before. Had expected her to restore her sleep cycle after a night of wakefulness. But these days she'll open her eyes to visitors at a mere touch.Which means that there are many opportunities for cognitive interaction - needed badly.

Friday Sep 28 11am: Last night I was so convinced that God will move on Miranda. She has recovered her sleep and took her PT well this morning. Still waiting for her to show awareness of the environment. Maybe later today.

Sunday Sep 30 10am: A troubling find - a mosquito bite to her forehead has caused redness over the scalp. May have to see the neurosurgeon again about possible re-infection. God I can't take it anymore!

Tuesday Oct 2 3pm: So after my protestation the neurosurgeon allowed me to take Miranda home for oral antibiotics, rather than intravenously in the hospital ward for the skull cellulitis. Been praying that the redness reduce. If it enlarge we might have to admit her again. Hoping for the best.

Thursday Oct 4 10am: Although some redness have also appeared above her right eyebrow they are beginning to reduce.  Hoping and praying.

Saturday Oct 6 10am: Redness have shrunk - a battle won. But the war is still raging. Her head is still locked to her left and still show no recognition of friends. Maybe soon.

Monday Oct 8 11am: Still praying her mid-brain will recover to regain consciousness. Today I extended her exercise standing on locked knees. They have to get used to taking her body weight.

Thursday Oct 11 8am: Waited 2 days for better news. It came yesterday when 5 colleagues came to cheer her. She seemed to be aware of their presence.

Saturday Oct 13 9am: More colleagues came yesterday but she lacks sleep. Her coma seems to deepen every time sleep escapes her. When she closes her eyes then she could begin to turn right from her locked position. Still waiting and hoping it will improve.

<End of post>  Next - "Shell"

Acceptance

The time has come the Walrus said, to talk of many things: of ships and shoes and sealing wax, of cabbages and kings - Lewis Carrol's Alice in Wonderland

I dreaded writing this post. Ten months ago to this day, before pulling Miranda from the brink of death she was given only 10% chance of full cognitive recovery by the neurosurgeon and then only after one year. And I was further stunned when told bluntly that she'll wear a colostomy bag probably for at least two years, if not for life. Today she is still not fully conscious, cannot recognize people, nor track events around her. The left cranial data bank seem silent. Short of a miracle to fully awake her, her body functions cannot improve much further than today, if not going downhill. Life goes on, but what quality? And what about the lives of those around? Hard questions to answer, if ever there are. But knowing Miranda, if her left brain works, would want everyone to continue at everyone's very best. And at the back of my mind is the dread of one day saying, "Farewell, see you at the junction." I recall what she said once to me, "If I get there before you, I'll wave you from the corner." How could some queen of science suddenly became what the British medical once unceremoniously called "cabbages"? Just the other day I heard from a friend that Miranda had told his wife that she rather not be a vegetable, a wish that she'd told me when musing about grave illness. But nobody will pull a plug so easily for loved ones. Eventually it was a decision that went with the flow. And now she's exactly what she will not have for herself. Just have to accept the outcome. Miranda is Canadian. I hear the Canadian geese mate for life. If one is shot the other continues its migratory flight, alone. It feels strange to fly alone again after all these years. Thinking inwardly (much more for me looking at my own life) it seems so compellingly unfair...But if we say we believe in the Word, now is the time to live it. I have to dispel these enticing thoughts. They're self-inflicting.

Monday Jul 2 1pm: Greeted me earlier today with a groan, but yesterday she looked pleased with many friends and family around her. Must be the beef soup.

Wednesday Jul 4 10am: Good to stick to a routine, expecting a greeting every 7am. Yesterday's physio review corrected some errors but other than the brain she's physically ship-shape. Today she'll get some chicken broth for strength. Unfortunately it goes straight to her tummy, by-passing her taste buds. Meanwhile this blog will be silent till 11th.

Tuesday Jul 10 1pm: Everyone missed her. Miranda cared for all those golfing seniors that she travelled yearly with. In these last 5 days I can still see her in my mind's eye, flitting around, lending a hand at every baggage and paying for those short of cash. Travelling alone for me now, like everyday, is an adjustment. I begin to notice couples, the companionship taken for granted I wish now to protect vigorously. Badly needed to make up lost time with her. Since last Thursday, I hear Miranda had been mostly awake in daylight, eyes opened for visitors. She stretched her fingers again this morning. Her focus as we speak to her is returning, ever so slowly. But mostly, her stare leftwards is still vacant.

Thursday Jul 12 11am: Felt in my bones she's going to make more progress this week, neurologically, after a wonderful prayer session with a visitor yesterday. Later in the evening I defied the ST's stern warning and fed her her favorite - coke. I was rewarded with pleasure on her face. She's been swallowing her saliva numerously for weeks since. If not now when?

Friday Jul 13 4am: Noticed her mouth continued to droop to the left side, drooling from the corner. But vitals remained normal. No, not another stroke - just that she had bitten her lips swollen. What a scare!

Saturday Jul 14 2pm: As she sat at the patio taking in the required sunlight, I just felt thankful that I can enjoy a simple joy of being with her and the dogs on a rain-soaked Saturday - quite a rarity when she's normal. Although she's still asleep and inert on the wheelchair, I'm grateful that at least her necrotic lip ulcer is retreating.

Sunday Jul 15 9pm: She was definitely trying to say something. It's been a few days already - felt so helpless trying to understand the garbled sound. Still looking nowhere to her left side.

Tuesday Jul 17 10am: Saturday was when I suspected another urinary infection and saw the stained diapers yesterday. But we have to be niggardly with antibiotics unless it is full-blown. Fortunately today the diapers were clean. Have to keep our weapons sharp, even though it's only Augmentin.

1981 Madison WI: Found this among the last boxes returned from her office. "All good things will come to an end(?)" Chaucer 1374

Wednesday Jul 18 3pm: Cheerful today, got to maintain eye-contact briefly before she headed leftwards again. But she's been crying when choking on saliva at the brother's house. Could be because of irritation from the feeding tube? If her swallowing improves must wean her off it. That's a prayer.

Friday Jul 20 10am: Have to find out why she's more conscious lying down than when upright. Gravity effect on the shunt?

Saturday Jul 21 10 am: Have been buffeted by sadness again. But prolonged sadness is enmity to God for we have been called to rejoice in all circumstances. I've been allowing mourning for too long. "Now is the time to draw your swords and axes".

Monday Jul 23 1pm: After a boring Sunday (usually no visitors, not even family) she started to show her teeth again (that she's pleased) this morning when I greeted her. But she must give up coke, as attempts to satisfy her have caused some choking.

Tuesday Jul 24 9pm: Danger lurks at every corner. This morning discovered a reddish swelling at the cranioplasty area. Low grade fever detected after all the visitors have left. Neurosurgeon was cautious. Hope that it is not an infection, otherwise she must be re-admitted. Pray...

Wednesday Jul 25 10am: Temperature remained normal thru' the night. Reddish swell smaller but neurosurgeons know what the worst could be - needing re-surgery. Hoping for the best. Now I don't feel so guilty avoiding crowds and asking visitors to wash their hands.

Thursday Jul 26 11am: The good news is that she seems free of infection. The bad is the mosquito bites she's been getting. More vigilance for the maids to avoid opening the doors unnecessarily. She seems cheerful this morning, taking long looks at her visiting distant cousin. Restless at night.

Saturday Jul 28 9am: The fit came at 4pm yesterday. She was tensed and wanted to sit up. When relaxed sitting up she turned deliberately to her right side and I could see her eyes trying to focus, like the left brain waking up. Then suddenly she collapsed in severe convulsions, her head to the left and mouth distorted. Her cries was hideous and went on for a full minute. Slowly she relaxed, feeble. When the ambulance arrived she was already calm. But she should be admitted, the A&E doctor said - who's to know whether the next attack could be worse? She's on a drip now, with anti-seizure (Keppra or levetiracetam) and antibiotics. Watching for cranioplasty infection. Pray that the best will come out of this. Perhaps a necessary step to neural recovery. Fewer visitors for now at TTS ward 12a. At least till expected discharge on Wednesday.

Sunday Jul 29 9am: So the contrast ctscan shows no skull infection. But the scalp remains red. Ventricles now normal although left brain damage remain as scarred tissues. Watches TV from the bed without turning left. Thank God that's an improvement. May the Spirit remains at peace with her throughout the brain recovery. Visitors should resume, with usual precautions.

Monday Jul 30 8am: She remained stable yesterday despite surviving the "war-zone" at A&E admissions without further infection. Therefore must get her back to home-front ASAP. Also missing physio her upper lip tend to be tightened and distorted. Cause of seizure? Scarred lesions in the damaged brain. Likely to recur with stress without medication. For now must remain vigilant, especially when the water appears calm. Bad turns have happened in hospitals when things looked rosy.

 Of all the dozen of dogs in her life Pi's death from intestinal amoeba affected her most visibly. Not 3 weeks from that last National day that Miranda suffered the stroke.

Tuesday Jul 31 8am: Have to wait for the culture tests before discharge, whether it matches that of the UTI or something more ominous.

Wednesday Aug 1 5pm: Both tests came back negative, so Miranda will go home Friday. I wish it'll be earlier, but something to be thankful for.

Thursday Aug 2 noon: Time to remove those dreaded intravenous inserts to her bruised arms and return to oral medication. She seems rested today, eyes opened. Restless at night.

Friday Aug 3 noon:  More relaxed and able to sleep now she's at home.

Sunday Aug 5 1pm: True to form, Miranda is not usually talkative, even if she could talk. Though visitors please her she would not speak a word, but her eyes tell it all. The anti-seizure medication yesterday brought back periods of drowsiness, but am happy to add that she's beginning to stretch her fingers more.

Tuesday Aug 7 10am: Have to watch the hard spot on her skull cap - probably neurosurgeons do not understand engineering fit. At friends' coaxing last night she began turning to her right - a positive sign, but what an effort! Spending more time talking to her, as her eyes now focus better.

National Day 1pm: She sat up thru the night and intermittently watched the free movie channels available now. However this time she does not turn to friends calling her on her right. But she tries to recognize those on her left side.

Saturday Aug 11 7am: She looked long at her visiting cousin yesterday, twitching her right eye as if to make a connection. This was exactly what happened 2 weeks ago during her seizure. Thank God there was no breakdown this time. Keep firing!

Monday Aug 13 10am: Yesterday was another dismal Sunday. Her head still contorted to the left and she did not seem even to notice me. But her eyes remained active. This morning she had a hard time clearing her chest - suspect it is the feeder tube irritating phlegm. Pray that the time comes for her to swallow normally and rid of the feeder. But we have prayed this before...the speech therapists must be the most cautious people in the world.

Wednesday Aug 15 11am: Compared to yesterday she was quite responsive to physio - I could even sense that she's somewhat aware of the good in the exercises. Drowsiness has returned - probably due to anti-seizure dosage. And of course the scourge of the secretions in her throat or whatever that is irritating. Was OK till evening when I rudely realized that Miranda is far from being out of the woods. She lifted her head to her left and tried to see around her - as if trying to wake up to the surroundings. But her stare was fixed and dark. She is still in coma.

Friday Aug 17 8am: Her left face was swollen from yesterday evening. Could be an insect bite like the one on her groin before - edema-like. But no fever and vitals normal. Cold compress helped reduce it but she does react to pressure on the region. Another infection watch.

Saturday Aug 18 10am: The mysterious swell remained, though reduced by hot compress and her left eye not so boggy. Got to cheer her up. Maybe I'll get her permission to have a photo of her on the blog.

Monday Aug 20 8am: Another quiet Sunday yesterday and the maid was off on Hari Raya. But got to spend time up close. She was trying to lift herself off the pillow, her stiffened arms riveting. You could see the fight is still in her - as if she was trying to wake up to her surroundings, eyes twitching. All I could do all afternoon was to cheer her on the side, hoping that it will not trigger another synaptic collapse. Also found out that the holes in her implant allow csf to flow, maybe causing her boggy temple. Unusual at such a late stage, but subsiding.

Wednesday Aug 22 10am: Almost fell off the chair fixing the bulb yesterday. Must remain in one piece (but not the bulb)! Miranda's right hand is becoming more active than her left - contra-wise to her injured left brain. But not as active as her legs. Yet she's not talking though her eyes can follow some. Her boggy left temple is reduced to a bump - not sure what to do but to watch her temperature.

Friday Aug 24 10am: Still troubled by her mysterious boggy left skull but no fever. Neurosurgeon did say bogginess expected but for how long? She does not look too good this morning - probably lack of sleep. We'll see how she cope this afternoon. If her cheer returns I'll take a photo.

<End of post>    Next: Firing thru the lesions

Mobility Crevasse - Challenging the Limbs

I can never forget the look on Miranda's grim face the day of the burst aneurysm as her left brain fought valiantly against the haemorrhage. You can compare it to a burnt motherboard on a computer. The controlling software went absent - there were no signals to attached devices, even though they were not damaged. Where this analogy ends is the hope - the human brain is known to have some level of self-healing that is not completely understood medically today. That is why we persist in getting her attached limbs and unused muscles toned for the moment when some day, signals again come from the brain. All the hours of therapy and massages will be worth it. This past two months Miranda hardly progressed in her speech. We seem defeated by the speech mountain and we have to return to overcome it one day. On the same tough road to recovery is the need to restore use of her muscles. Have to cross this crevasse.

Friday May 18 11am: Yesterday was Miranda's last day of employment at A*Star, where she founded and grew the Institute known as BTI. It was also a busy day for her as the neurosurgeon re-calibrated her VP shunt to allow bigger orifice flow, having seen from the CT-scan that her ventricles were fuller than before. The Speech Therapy was nothing more than counseling - she is still not ready for oral feeding and much dependent on oral hygiene and precautions. Her infections have subsided - the left eye less red and the groin swelling reduced. So on the road we plod. This month we will try standing Miranda more on her feet and to challenge her arms.

Sunday May 20 8am:
"No one cares for my soul...I cried out to Thee, O Lord thou are my refuge.
Give heed to my cry, for I'm all alone. Bring my soul out of prison, so that I may thank you. The righteous will surround me and you will deal bountifully to me." Psalms 142: 4-7

Monday May 21 11am: Last evening group of 9 elders came to break bread round her bed. She was all eyes. Throughout the entire time. Probably tensed up wondering what is going to happen to her in the seriousness and ritual of these men standing around. But this morning she noticed me and relaxed. She needs a lot of calm, personal interaction, something her friends (and family) can provide at this stage of recovery. I think she is moving towards MCS (minimally conscious state) from persistent vegetative state (PVS). That would be something to praise God for.

Tuesday May 22 11am: Her stiff limbs are not contractures, as they can be relaxed by massage. Probably the brain's recovery phase (?). The advice for coma patients is to massage the static body as frequently as possible. Here is an area that I am completely alien to - and Miranda is certainly the last person to rush to a massage parlor in our past holidays. But to get the limbs supple it is a necessary skill to learn.

Wednesday May 23 11am: She cried out last night - like one of frustration. Have to find out why she's salivating so much and even choking on her saliva. Left cornea not healthy, shedding some tissues. Hope that it cures completely. More alive today.

Thursday May 24 2pm: Didn't know that her air-con broke down till late last night. Poor girl - didn't have the means to say so and the maid clueless. But she's a toughie - managed to gaze at me this morning and opened her eyes willingly most of today. So now we will massage all her limb muscles and have her stand longer on her feet, with the knee restrainer. Unusually hot night and desperate for cooler air I prayed for rain.

Friday May 25 11am: Thank God the rain came at 3am. She'll not have air-con comfort till Saturday. Rain again tonight?

Saturday May 26 8am: She slept through the fans. We inveterate air-con sleepers are at the busy serviceman's mercy in hot seasons like this. After the air-con was fixed she looked fixedly on 2 former AGA students of hers, trying to recognise. Back to the sleep routine again.

Sunday May 27 6pm:

"Turn and be gracious to me, for I am lonely and afflicted." Psalm 25:16

"Even though my family is not with me, the Lord will receive me." Psalm 27:10

"And surely I will be you always to the very end of the age." Matt 28:20

Monday May 28 1pm: Despite her deep sleep since Saturday I can still feel she could hear my voice. The lips relaxed, eyes then opened briefly before shutting them again. She's like saying "I see you and I know but I still need to sleep!". Today I extended her standing position 15 minutes to develop her flaccid calf muscles. Still coughing on her saliva.

Tuesday May 29 11am: Got to briefly open her eyes and to watch her favorite "Sound of Music". Her left eye, still wet seems better, but her salivation continues. Some old friends came to maintain eye contact. She would open her eyes in our mid-conversations, as if interested in the banter. Miranda loves food and some dear visitors have brought me delicacies that she loves. Thank you! and for other presents too. But I do feel a bit of guilt enjoying them while looking at her, inert in her wheelchair or bed.

Wednesday May 30 8am: A friend told me vivid dreams about talking to her again, in long, level-headed conversations. I have this constant echo in my head - "Kian-na lets do this...I don't think I want to do that..." Its like neural synapse transfer.

 Lake Tahoe 1990s - Good to remember the times when we have every cylinder firing.

Thursday May 31 1pm: Some visitor prayed the other day that God in His time will turn on the switch to her consciousness. What a refreshing prayer! Her sleep cycle is now double the normal diurnal - sleeps every alternate 24 hours, and then opens her eyes occasionally.

Friday Jun 1 8am: "Com'on keep fighting! You're getting better!", I urged her as she struggled hard opening her wet, sticky eyelids. Earlier she had laid back contentedly on her bed after therapy and a hot bath. It was a hot night with cool morning showers and I had to get up early to ensure the air-con was not becoming too cold. I'd decided to pray for only one thing each night - starting with her will to go on living.

Saturday Jun 2 7am: As I stirred from bed I used to hear the car on the driveway at the crack of dawn as she came back with market delicacies early Saturdays. Not anymore. She laid distorted on the raised hospital bed with her hands clenched, nursing her brain in fidgeted sleep. But her left eye seemed better as she peeked at the TV screen when I turned on. Today my prayer is that she'll voluntarily move her arms more.
"Grief is the price you'll pay for love." - HM Queen Elizabeth II

Sunday Jun 3 8pm: "Meet you at the golf ball", Miranda referring to the giant water feature we used to wait for each other after our showers. But these days I come straight home unless I fancy eating after golf alone. The nearest she get is watching golf on TV. I wonder whether she could track what she watches? That's a prayer.

Tuesday Jun 5 10am: Yesterday was a complete day of rest. When she came to this morning she was totally disorientated - like she's never seen me before. I've determined that from now on, when her eyes open for more than 5 minutes we will administer the NACD program (package of stimulants relating to smell and touch). Thank God we've finally rid her of tongue deposits from her reflux and her left eye is on the mend. But there must be some more active way of preventing decline of her mental capacity.

Wednesday Jun 6 2pm: A curious thing happened this morning at therapy. When I buttressed her arms on the bed and let her, sitting, lean on them, her eyes opened fixated. I then softly whispered that that's how she strengthen them she looked at me. I wonder whether I've hit the spot on her brain preventing any of her arm movements. I pray that it will be revived.

Thursday Jun 7 11am: Came up with idea of stimulating her mind and prevent mental decline - watching movie re-runs with her.  I've forgotten most of Hawaii-5O but by watching and discussing (one way) with her, she kept her eyes opened throughout the episode. She even closed her eyes during the adverts and resumed with the story. Happy day!

Saturday Jun 9 8am: Yesterday was another dismal day of sleepiness, so this morning her eyes opened for some daylight. As she has totally immobile arms there's something else to watch out for - mosquitoes. Must warn the maid to watch the bite areas as the last cellulites swelling at the groin must be due to some bites. A serious vector infection may imperil her life.

Sunday Jun 10 8pm: Contrary to expectations she kept awake most of today. So after a while I rushed to her side to ensure she is not lonely without any visitors. But her eyes glued to the TV. I then realized that I was the lonely one.

Tuesday Jun 12 2pm: Yesterday was uneventful, except she still opened her eyes for visitors. Today she remained wakeful and even uttered something during therapy. Strange that her right arm is now more active than the left, given that her left brain is impaired.

Wednesday Jun 13 10am: The gall of it! After months of hospital rigour the maid still did not self-quarantine when she was sick. Had to send her out of Miranda's room. Fortunately it wasn't flu or something infectious as it could be the death of her. The medical back-off treatment rule still applies - as she is still comatose.

Her favorite fruit (1980s at a small Malaysian town)

Thursday Jun 14 5pm: Today is her off day again, sleeping. But more so on the wheelchair than horizontal. Like to believe that rest is the mode for left brain repair, as now she tends to turn to her left a little less, indicating a less dominated right side.

Friday Jun 15 9pm: I was wrong. Last Thursday I thought she could follow a story on TV. But today she stared through the commercials as though they were part of the story. Then I had to switch it off so that I can make eye contact. Alas, she is still in coma.

Sunday Jun 17 10am: So despite all the provocation to wake her yesterday she continued sleeping during visitors. But this morning I found her knee lodged tightly against the bed rails - over-active legs during a hot night. What can I do? I cannot watch her 24/7. Besides kicking is good against bed-sores as she is unable to turn herself.

Monday Jun 18 2pm: Her office stuff came home today. As I peeked into the boxes there was a lump in my throat.

Wednesday Jun 20 11am: A difficult yesterday for swallowing, and still struggled a bit today. But she seemed pleased to see me after showers. More wakeful for visitors, indeed opened her eyes for most of today.

Thursday Jun 21 11pm: Not only was she engulfed by sleep, she could only stare blankly into space at visitors after being awoken. Also had to turn her away so as not to be bewitched by constant staring at the TV. I was so aggrieved that had to leave the house for a break.

Saturday Jun 23 4pm: She started the day crowing something unintelligible but a good sign for speech unlike yesterday's staring into space. Looking normal, except she still does not engage people. Guess that has to wait.

Sunday Jun 24 8pm: She's able to look more to the right and stayed awake for most of today. Prayer wish: that she may utter something consistently.

Tuesday Jun 26 9pm: She was visibly pleased yesterday when her close doctor friends stroked her face. Rather than recognition I thought because she's been alone and company must have brought joy. Or was I the loner? It's hard to tell her feelings.

Thursday Jun 28 2pm: Yesterday had to quarantine myself, probably caught a bug at the dentist's. This morning I could hear her crow of frustration. Not of sadness but a plaintive cry. She has started to cough out the salivation, a positive sign. The encouragement to fight on (myself included) has become a daily prayer.

Saturday Jun 30 10am: This morning greeted me with some garbled noise. But I can sense she's getting weaker because she used to be able to turn her head toward visitors. Must strengthen her with some beef soup. She's more alert on bed. The grind is getting on to me too. I must rejuvenate.

< End of post >. Continue in July

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" >