Tuesday, 11 October 2011

Starting Over

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


  1. Hi Kian,
    S & I just back from Shanghai/Suzhou.We couldn't log on to Blogspot at all.Google not favoured there.Good to hear Miranda is showing improvements.Have been praying daily for you and she.S will drop by TTSH tomorrow .Shalom .PKian

  2. Hi PKian! So glad! Trachea tube out and she's opening eyes more and for longer. This morning eyes were full flitting here and there. Must get a consistent Yes/No response. Sofar not getting any. Hope you & Sal had a good trip!

  3. Now that you are saying it Kian, I'd like to talk about my experience with Miranda. I note that she opens her eyes quite wide at 8pm and might do so thru 8.30pm or so. One nite I talked to her continuosy. She did not move her eyes right/left as I requested, but I am very sure she looked into my eyes as I talked to her. Another nite at around 8pm as well, as I looked and talked to her, her head moved forward toward me - twice, happened! My hopes run high that she can hear and very likely recognise!

  4. Yep LimTzur, also to you visitors out there, the next time when her eyes are opened, get close and see if she can recognize you at eye contact. You might have to unmask for a while. While you're at it, you might want to try waving in front of her to see if she blinks! A test of whether she is focussed on you.

  5. Kian, when we sang choruses on Wed, I noticed that Miranda looked at you intently and closely, with great attempt to focus,to identify the image and find the recognition. We continue to pray to God Almighty who answers our prayers exceeding abundantly more than we ask for or imagine. Take care...

  6. Dear Kian,

    I read your blog every day and we all still pray for Miranda. What a gal! I consider myself fortunate to have ever touched base with her. As I have said, Miranda was always so upfront with what she could or could not do and what she would do. When she said she would do it, she did. In these times that is absolutely refreshing.

    I feel for the decisions you have to make and I read your struggling through them. Our decisions for my husband were always based on maintaining his sense of dignity and self worth. My sons made the decision to have him live in a special facility that could tend to his needs 24/7 and rehabilitate him. Everyone's choice is different.

    Please do take care of yourself and be sure to meet your own needs so that you do not run down. It is one of the best ways I know to make sure your can take care of Miranda’s needs. She is struggling to return to you and everyone.

  7. Thanks Pat. Exactly as many would have said of her. Her gentle character must have won over the rehab doc also. Her motto could be, "say less, do more"!