Sunday, 26 February 2012

Long Road to Cognitiveness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

<End of Post>  Next -  Speech Mountain


  1. Dear Kian,
    Our CG prayed for M and you this afternoon after our second meeting at my home.Know that the Lord is with both of you.Shalom.

    1. Thks PKian! Funny I was just having a v emotional talk with her about an hour ago!

  2. Two well-known leading Christian Healers, Bill Johnson & Randy Clark, will be in Singapore Expo from 14 to 17 Mar.

  3. Fully understand your feelings, sentiments and struggles. The Lord God's abiding Presence is your Comfort and Strength. Take care.

  4. Thank you Freddy (?) for arranging for Miranda to go Singapore Expo at 6.30pm today 16th March. I know that the Lord will heal her, matter of when. Thanks Evelyn for your words and "The Race" by R Solomon. I was mentally down the last week and they were timely.