"When we get to heaven you'll be without your eyes and I without my mouth", she once mused about our respective faults. But ever since her stroke I long for her sharp tongue to return, even to say the simplest of things. Speech has got little progress - the latest is her tendency to sigh and exclaim or utter incoherently. Her hearing seems excellent, even accentuated by her lack of communication. But when we speak her eyes seem to show focus and the question is whether she understands but could not answer, or not understand as well as uncommunicative. It is not clear whether her damaged memory has affected her ability to associate words with meaning, or damaged her vocal controls or both. Right now, there is not even a channel for yes-no communication. So probably her hearing vocabulary is non-functional. Anybody's guess, because her non-volitional limbs are also not indicative of her desires nor understanding. Only her eyes blink. Yes, we've tried using it as a Y-N channel, but inconsistent. Hearing vocabulary is non-existent?
Thursday 4 Apr 8pm: Last few days she appeared sad, so often I've to put on a brave face to cheer her. She's cheer-able.
Monday 8 Apr 10am: By looking at her eyes it seems she still cannot recognize her friends or other family. She will not turn her head to your voice and the only way she focus is when you look straight at her line of vision. Some way to go before she comes out of coma completely.
Thursday 11 Apr 1pm: Fatigue - thats what I'm fighting these days. But she sleeps most of the time.
Monday 15 Apr 11am: Is she coming back ever? I kept asking myself this question. Doctor friends don't think so - unless they are miracle believers. Meanwhile Miranda in her most comfortable state looks like a baby, unaware of whats around her.
Thursday 18 Apr 9pm: A small improvement - shes now looking straight and focus straight. Still making those unintelligible utterance softly.
Wednesday 24 Apr 11am: She looks normal. Especially after a good night's sleep. But her cognition is not coming back. Only for now I hope. There's also a slight infection.
Sunday 28 Apr 8am: Have not been able to make any new entries on this blog on her progress. Only significant new developments will be noted from now.
Sunday 5 May 9am: Could Miranda have been saved from this? That is the question I kept asking myself in the doldrums of her recovery. Could the aneurysm be triggered or associated with her onset of Parkinsons? If only she had an angiogram instead of cat-scan in 2009 review of her motor condition. We could have then seen the bulge and the demon would have been caught in a simple hourly radiography-intervention procedure. Despite the potential life-threatening angiogram, her family being neurologically predisposed (her father's stroke, her advancing dementic mother, etc) and the high pressure job - couldn't it have caught the attention of some luminary medical friend? I hear in Japan angiograms are routine procedures of senior citizens. But here I am watching water rushing under the bridge, holding the can.
Post note: There is a possibility that Miranda does not have Parkinson's at all, as the drug prescribed then (2009) did not have significant improvement on her motor response. Golf improved it. As it turned out the aneurysm dramatically showed itself while playing golf.
Wednesday 8 May 6pm: Surrounded by family and long lost friends last 2 days think I detected a smile. Friday 10 May: Cough and some infection. Visits avoid for now.
Friday 17 May 10am: Still on antibiotics for her UTI. Mysterious leg rash disappeared.
Wednesday 22 May 8pm: So now the UTI has subsided, but the cough persists for almost 2 weeks now. Hoping the chest irritation is not serious. She has to learn the excise the phlegm and avoid any pneumonia which has grave consequences for bed-bound patients.
Saturday 25 May 4am: "Don't worry - just keep going and I'll meet you on the other side". Miranda used to talk about a father encouraging his young son on his first solo swim for a full lap. It must be daunting to brave the interminable cold water, thrashing all might for the other end of the pool to come into view. But then there was the smiling Father. If she had known that she will not be conscious again before succumbing to the stroke I'm sure she'll exchange those same words with me.
Thursday 30 May 10am: Just when I was giving up ever hearing any word from her she started uttering something. But her cognition is still weak and it is unclear whether she has any vocal memory.
Saturday 1 Jun 8am: She seemed to be able to sense urgency in conversation, like when I mentioned visiting my father. Hoping her awareness of the environment increases.
Friday 7 Jun 4pm: Making a slight progress of vocal utterance - usually a sigh or frustration or discomfort.
Sunday 9 Jun noon: So when I told her that father passed away last week she just looked straight at me unmoved. That is very unlike her, she is a most filial person to family members. At night her vocal cries continued. She's been fighting a chest congestion and fits. Back to Kepra medication.
Wednesday 12 Jun 10am: The anti-fits drug is making her sleepy most of the day. Still struggling with chest congestion. At 2pm there was blood due to trauma from the nasal-gastro feeding tube. It may or may not be the cause of all the phlegm and congestion from the throat and chest.
Friday 14 Jun noon: Her cough was reduced and hence she was able to sleep last night. Must watch for such infection. This morning was able to utter some sound and roll her eyes. Her verbal progress still slow - her neural recovery must precede it.
<End of post> Next - Memory
Monday, 1 April 2013
Friday, 22 February 2013
Thankfulness
What is there to be thankful for?
It has been one and a half years and it could even be seven, ten or what. Someone more than a companion - my best hope for a better life - gone. Since her stroke life is one of emotional privation. I wasn't even aware that I was fighting some form of PTSD (post traumatic stress disorder). Memories of better times and thoughts of the foreboding future haunt everyday. Continuing with this thinking will miss a vital point - I must complete this journey. A positive mind will make it lighter, despite the realities.
First, this blog is something to be thankful for. Kept me sane. It cheered me to know even people from far away read for prayer or concern. All who care for Miranda makes me thankful. The myriad acts of kindness that I otherwise would not have. Her profound and catastrophic illness seemed like suddenly, something switched her off . But for me it has been sort of a rebirth. Visitors - many strangers before, endue me with much encouragement, strength in ways I've never seen nor ever will in a spartan lifestyle. Their very presence than words are cause for thankfulness. Then there are the unseen blessings - many remember Miranda in their daily prayers. The struggle for her well-being is titanic because of all those lives she touched. Acts of concern and gifts of books, food and what else ended up with me. Thinking of it prods me on. Miranda helped too. Her thriftiness in savings enable me to cope financially, although she might have planned to eventually give it all away. She left me credit cards. Even her kindness to buy an insurance to oblige a friend came back to help, although she was already adequately covered at work during that time. Finally the dogs make me thankful - whenever they see me their tails wag unconditionally. Imagine for someone else who's not Miranda, with none of these blessings how much heavier is it to carry the bed-bound sick for what's left of life. Grim.
8am: Her head is turned forwards than locked sideways, but her eyes look blank ahead. Something is changing inside her brain? Pray that it is positive.
Tuesday 26 Feb 8pm: She responds to stroking on her left forehead by closing her eyes in pleasure. But I still cannot say she understands what I say.
Friday 1 Mar 8pm: Exactly a year and half - time Marches on. She's prone to look straight at me as if pleading a request. But no words and I could only walk away baffled.
Monday 4 Mar 10am: So I wheeled her around the house yesterday, hoping it will bring memories of her entire design, tiles and all. Maybe she will - in time.
Friday 8 Mar 2pm: I tried to cheer her by saying funny things and I could detect the faint trace of a smile. It is not my imagination, I hope.
Monday 11 Mar 2pm: I tried not to let her sunken skull intimidate me into desolation. She can look, even focus but no memory whatsoever of people around her. She's not even attempting to talk nor move her limbs but she is in otherwise good health.
Friday 15 Mar 4pm: "You know, I've got zillions of things to do," she said with her usual high-energy voice. I was exceedingly glad hearing her voice again, and thinking she must have fully recovered. Then I woke up.
Tuesday 19 Mar 3pm: "You know, it'll be good if you can go play golf with me than letting me go alone everyday," I would say to her often before I leave. Then I would detect a faint smile from her face. But my doctor friends say that she's probably not following our conversations.
Friday 22 Mar 8pm: There is definitely some progress on cognition. When I rose from her bed I noticed her eyes tracked me briefly. And there was that smile again. I know her well enough to notice it. But I hope I'm not deluding myself the next time around. But thank God.
Tuesday 26 Mar 10am: She woke up with an exclamation, her voice slurring for quite a while. We might have to re-visit her speech mountain soon.
Friday 29 Mar 5pm: Her legs continue to strengthen despite still not able to swallow smoothly. She shows her pleasure getting to rest on the bed after the daily 3 hours from the wheel chair. At least that emotion is returning.
Man's Credits: The Philadelphia Gay Men's Chorus (They sing well)
2009: The ladies' ensemble, Nathaniel Christian orphanage, Rumania
<End of Post> Next: Speech Mountain revisited
It has been one and a half years and it could even be seven, ten or what. Someone more than a companion - my best hope for a better life - gone. Since her stroke life is one of emotional privation. I wasn't even aware that I was fighting some form of PTSD (post traumatic stress disorder). Memories of better times and thoughts of the foreboding future haunt everyday. Continuing with this thinking will miss a vital point - I must complete this journey. A positive mind will make it lighter, despite the realities.
First, this blog is something to be thankful for. Kept me sane. It cheered me to know even people from far away read for prayer or concern. All who care for Miranda makes me thankful. The myriad acts of kindness that I otherwise would not have. Her profound and catastrophic illness seemed like suddenly, something switched her off . But for me it has been sort of a rebirth. Visitors - many strangers before, endue me with much encouragement, strength in ways I've never seen nor ever will in a spartan lifestyle. Their very presence than words are cause for thankfulness. Then there are the unseen blessings - many remember Miranda in their daily prayers. The struggle for her well-being is titanic because of all those lives she touched. Acts of concern and gifts of books, food and what else ended up with me. Thinking of it prods me on. Miranda helped too. Her thriftiness in savings enable me to cope financially, although she might have planned to eventually give it all away. She left me credit cards. Even her kindness to buy an insurance to oblige a friend came back to help, although she was already adequately covered at work during that time. Finally the dogs make me thankful - whenever they see me their tails wag unconditionally. Imagine for someone else who's not Miranda, with none of these blessings how much heavier is it to carry the bed-bound sick for what's left of life. Grim.
8am: Her head is turned forwards than locked sideways, but her eyes look blank ahead. Something is changing inside her brain? Pray that it is positive.
Tuesday 26 Feb 8pm: She responds to stroking on her left forehead by closing her eyes in pleasure. But I still cannot say she understands what I say.
Friday 1 Mar 8pm: Exactly a year and half - time Marches on. She's prone to look straight at me as if pleading a request. But no words and I could only walk away baffled.
Monday 4 Mar 10am: So I wheeled her around the house yesterday, hoping it will bring memories of her entire design, tiles and all. Maybe she will - in time.
Friday 8 Mar 2pm: I tried to cheer her by saying funny things and I could detect the faint trace of a smile. It is not my imagination, I hope.
Monday 11 Mar 2pm: I tried not to let her sunken skull intimidate me into desolation. She can look, even focus but no memory whatsoever of people around her. She's not even attempting to talk nor move her limbs but she is in otherwise good health.
Friday 15 Mar 4pm: "You know, I've got zillions of things to do," she said with her usual high-energy voice. I was exceedingly glad hearing her voice again, and thinking she must have fully recovered. Then I woke up.
Tuesday 19 Mar 3pm: "You know, it'll be good if you can go play golf with me than letting me go alone everyday," I would say to her often before I leave. Then I would detect a faint smile from her face. But my doctor friends say that she's probably not following our conversations.
Friday 22 Mar 8pm: There is definitely some progress on cognition. When I rose from her bed I noticed her eyes tracked me briefly. And there was that smile again. I know her well enough to notice it. But I hope I'm not deluding myself the next time around. But thank God.
Tuesday 26 Mar 10am: She woke up with an exclamation, her voice slurring for quite a while. We might have to re-visit her speech mountain soon.
Friday 29 Mar 5pm: Her legs continue to strengthen despite still not able to swallow smoothly. She shows her pleasure getting to rest on the bed after the daily 3 hours from the wheel chair. At least that emotion is returning.
2009: The ladies' ensemble, Nathaniel Christian orphanage, Rumania
<End of Post> Next: Speech Mountain revisited
Tuesday, 1 January 2013
Endurance
If hope is on one side of a coin endurance must be on the other.
Everyone must make his or her own journey through life, even alone. No matter how
arduous or demanding sticking to the end is a known mark of character.
No one knows for sure what is the end and Miranda must sail thru the
doldrums that she's facing at her journey now - neither
better nor worse. It is also our journey - for those of us who knew her
enough to continue seeing thru her illness. Sometimes heart-breaking, if
you know her former self. As for me she is still wife, although our
marriage is all but gone. I still make one-way conversations with her
daily. Hard part is not getting any feedback. But then steadfastness to continue living must be shared - the healthy
or the happy owe it to the less fortunate. This post is not just about
Miranda - it is also about us. In the end to be found standing, still. Despite our vicissitudes.
New Year's Day Noon: The maid's off today, so I have her all to myself. She looked cheerful, despite having only slept 4 hours. Maybe its the holiday spirit.
Friday 4 Jan 10am: Nothing to report except she's chugging along. Starting to strengthen her legs standing (with help). Pray that she can begin to say something meaningful from those sighs and utterances.
Monday 7 Jan 10am: One of the dangers bed-bound patients must watch is chest congestion and infection. She's having congestion lately and am thankful that she's learning to cough strongly. Even sneeze - but that's probably due to dog dander on my clothes. She's also due for her 6-monthly review. When will she learn to swallow normally is my utmost concern. She's doing it but not fast enough for a meal and rid of the dreaded feeding tube which causes all those throat irritations.
Thursday 10 Jan 9pm: A week of fighting demons - one of self-doubts and depression and of chest congestion for her. Every physical disability (mine and hers) looms like mountains to climb. Have to dig deep inside.
Sunday 13 Jan 10am: Tried to encourage talk when she opened and closed her mouth at me. But no connection. The words failed. An indomitable spirit must stay afloat despite streams of endless obstacles. Like these days. Have to ride on wings of eagles (Isaiah 40: 31)
Tuesday 15 Jan 2pm: My wings drooped - seized by a sudden pang of nostalgia of long ago memories. This can be triggered by a lack of sleep. But Miranda rested well last night and does have a slight whimpering response to touch, although the eyes show little emotion.
Then came Isaiah 45:5-10 today - "I am the Lord, there is none else...I the Lord do all things...salvation, righteousness..I created all things..."
Friday 18 Jan 9pm: I continue to interact closely as it is probably her only window to the outside world. Yesterday when I prayed her eyes seemed attentive throughout.
Wednesday 23 Jan 11am: Stable - better than getting worse. Progress painfully slow though. She's uttering more and eyes more engaging, although a sign of being comatose is her inability to track your eyes or hands. Now is the time to mentally interact more with her, unlike 6 months or a year ago, when there were many visitors but she wasn't ready.
Saturday 27 Jan 3pm: These 2 days her nystagmus was garish - both eyes kept scanning in a wide arch from left to right as if uncontrollable. Maybe it can be a positive sign of the brain trying to wake up, but I'm more positive than my doctors dare to say. Then at 2pm her hand-phone which I inherited since her stroke reminded me of our anniversary dinner, an event she had booked for more than two years ago!
Tuesday 29 Jan 11am: Somehow she doesn't seem to look forward to my morning greetings as before. Her eyes glazed over instead of focusing. Must strengthen her will to live again. Maybe another day.
Friday Feb 1 11am: I hesitated to make this entry but I'm thrilled. Miranda turned her head and looked straight instead of locking left up to now. Thank God her nystagmus is not worse. Hoping that she continues to look straight or more right. If the mid-brain continues to recover it will be a huge step to consciousness. Her arms are still inactive and she needs to swallow better.
Tuesday Feb 5 11am: She continued her standing routine and I noticed she will look right standing. So important to stand as to give spinal feedback to the brain.
Lunar New Year 8pm: I had set up a disappointment for myself for being too optimistic. Her brain is taking its time to recover - she can see straighter but not able to track or turn to attention. But we must persist the more on her physiotherapy - standing on one leg and loosening her tone. Now is the time to stimulate her brain as much as practicable. With no feedback, there's only that much one can say to her.
Tuesday Feb 12 9pm: Third day of Lunar NY and babies stimulated her most, by her looking at them. But her sleep cycle is off again. Also she still does not respond to cues, "If you can hear me blink your eyes twice" doesn't work. Her hearing is acute (body twitches at every sharp sound in the room), so it must be her understanding.
Valentine's Day 11am: What a busy week of visitors and it must have lifted her spirits. Her eyes continue to focus on them. But she developed a slight cough. Have to watch her lungs and throat.
Saturday Feb 16 3pm: So I stimulate her mind with anything. Sometime ago when Miranda got started well with BTI she was taking classic pop piano lessons. Running thru her class pieces I found this and when she heard it her mind was at peace. ["If We Hold On Together" from "The Land Before Time" (1988) Music by James Horner & Will Jennings Originally performed by Diana Ross
Played on Yamaha P-140]
Tuesday Feb 19 3pm: Little progress of cognition. Even her apparent "pleased to see me" look in the morning getting rarer. Endurance is such a passive thing. I think I've found a better word to replace the title of this post: Steadfastness.
One day this blog title must also be changed - to FallenPillar (restored). When will it be?
< End of Post > Next - Thankfulness
New Year's Day Noon: The maid's off today, so I have her all to myself. She looked cheerful, despite having only slept 4 hours. Maybe its the holiday spirit.
Friday 4 Jan 10am: Nothing to report except she's chugging along. Starting to strengthen her legs standing (with help). Pray that she can begin to say something meaningful from those sighs and utterances.
Monday 7 Jan 10am: One of the dangers bed-bound patients must watch is chest congestion and infection. She's having congestion lately and am thankful that she's learning to cough strongly. Even sneeze - but that's probably due to dog dander on my clothes. She's also due for her 6-monthly review. When will she learn to swallow normally is my utmost concern. She's doing it but not fast enough for a meal and rid of the dreaded feeding tube which causes all those throat irritations.
Thursday 10 Jan 9pm: A week of fighting demons - one of self-doubts and depression and of chest congestion for her. Every physical disability (mine and hers) looms like mountains to climb. Have to dig deep inside.
Sunday 13 Jan 10am: Tried to encourage talk when she opened and closed her mouth at me. But no connection. The words failed. An indomitable spirit must stay afloat despite streams of endless obstacles. Like these days. Have to ride on wings of eagles (Isaiah 40: 31)
Tuesday 15 Jan 2pm: My wings drooped - seized by a sudden pang of nostalgia of long ago memories. This can be triggered by a lack of sleep. But Miranda rested well last night and does have a slight whimpering response to touch, although the eyes show little emotion.
Friday 18 Jan 9pm: I continue to interact closely as it is probably her only window to the outside world. Yesterday when I prayed her eyes seemed attentive throughout.
Wednesday 23 Jan 11am: Stable - better than getting worse. Progress painfully slow though. She's uttering more and eyes more engaging, although a sign of being comatose is her inability to track your eyes or hands. Now is the time to mentally interact more with her, unlike 6 months or a year ago, when there were many visitors but she wasn't ready.
Saturday 27 Jan 3pm: These 2 days her nystagmus was garish - both eyes kept scanning in a wide arch from left to right as if uncontrollable. Maybe it can be a positive sign of the brain trying to wake up, but I'm more positive than my doctors dare to say. Then at 2pm her hand-phone which I inherited since her stroke reminded me of our anniversary dinner, an event she had booked for more than two years ago!
Tuesday 29 Jan 11am: Somehow she doesn't seem to look forward to my morning greetings as before. Her eyes glazed over instead of focusing. Must strengthen her will to live again. Maybe another day.
Friday Feb 1 11am: I hesitated to make this entry but I'm thrilled. Miranda turned her head and looked straight instead of locking left up to now. Thank God her nystagmus is not worse. Hoping that she continues to look straight or more right. If the mid-brain continues to recover it will be a huge step to consciousness. Her arms are still inactive and she needs to swallow better.
Tuesday Feb 5 11am: She continued her standing routine and I noticed she will look right standing. So important to stand as to give spinal feedback to the brain.
Lunar New Year 8pm: I had set up a disappointment for myself for being too optimistic. Her brain is taking its time to recover - she can see straighter but not able to track or turn to attention. But we must persist the more on her physiotherapy - standing on one leg and loosening her tone. Now is the time to stimulate her brain as much as practicable. With no feedback, there's only that much one can say to her.
Tuesday Feb 12 9pm: Third day of Lunar NY and babies stimulated her most, by her looking at them. But her sleep cycle is off again. Also she still does not respond to cues, "If you can hear me blink your eyes twice" doesn't work. Her hearing is acute (body twitches at every sharp sound in the room), so it must be her understanding.
Valentine's Day 11am: What a busy week of visitors and it must have lifted her spirits. Her eyes continue to focus on them. But she developed a slight cough. Have to watch her lungs and throat.
Played on Yamaha P-140]
Tuesday Feb 19 3pm: Little progress of cognition. Even her apparent "pleased to see me" look in the morning getting rarer. Endurance is such a passive thing. I think I've found a better word to replace the title of this post: Steadfastness.
One day this blog title must also be changed - to FallenPillar (restored). When will it be?
< End of Post > Next - Thankfulness
Friday, 23 November 2012
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
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.
<End of Post>
Next: Endurance
Sunday, 14 October 2012
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"
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.
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?
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"
Saturday, 25 August 2012
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"
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.
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.
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"
Sunday, 1 July 2012
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
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.
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.
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
Subscribe to:
Posts (Atom)