Saturday, 24 September 2011
The Road Back?
Saturday Sept 24 12 noon: Miranda is being moved to bed 21 Ward 13B. Visitors are still confined to family and close friends. To avoid infection and being infected please sanitize and use mask. Note visiting hours: 9am to 9pm. Re-registration needed.
1pm: She has begun to cough more and clear her throat. But her eyes remain closed, quivering her eyelids. Is this the beginning of the road back?
2.00 pm: As they prepared for the transfer, W & L, A & M, M & I came around the ward and gathered for deep prayer, led by W. It was no sooner than a hour later that she settled to her new surroundings, with view of the large window, bathed in light. We gathered and coaxed her with greetings and salutation. 4pm: She opened her eyes for the first time in 24 days! What a flash it must have been for her, ever so briefly, incognito. Thank God the next step is on the way for cognitive response! She should be encouraged with a dimmer surroundings. If you next visit her again, watch her flutter her eyes open. Like a miracle.
Sunday Sept 25 9am: Coughing and moving her jaws more often now. Neurosurgeon's view: Trachea-mask to remain until throat clears. Suction maintenance for next 2 weeks in the ward. Stoma may remain until a month further, till she is no more bed-bound. Preparing for home stay in 3 weeks. Yesterday's eye opening still an involuntary motion, according to Dr. EW. He lifted back both eyelids to reveal the left eye oriented this way and the right pointing another, unconnected - like what you'll see in a broken, bedraggled doll, upturned.
2.30pm: Her joints became very stiff, fingers curled into claws. V and E did basic physio on her limbs, as PTs are not available weekends. This is necessary, to avoid being a "foetal shrimp" (Neurosurgeon's words).
3.45pm: This time her eyes opened to a slit - V could see her right pupils through them. Her left eye was not so wide but L could see that she was trying to listen by the tilt of her head.
Monday Sept 26 9am: Trussed up against the pillow with her now misshapen head, her arms awkwardly askew, spastic legs kicking randomly once, one would not have guessed that she once played for the national netball team. She looks stern, severe, as if going to scold me again. Sometime the trachea-insert must come off. There is still lots of scolding left. Temperature 38C, being quite a spike so visitors now limited to family. Post-note: Trachea being weaned off by weekend.
12 noon: The sneeze awoke me at the couch nearby. To my surprise the trachy-mask is gone. She has been challenged to breathe entirely on her own. And maybe sneeze unhindered.
3pm: S and SE came just in time to see her open for a longer time focusing. This time the eyes seem coordinated or "connected". She tried to look. No even that seems too optimistic. The eye appeared fixated, in a daze as if trying to recognize your face. Then she appeared to try to talk and sit up. The PT did a thorough workout and clear some more throat congestion. When you visit, say your name slowly and re-introduce yourself again, let her gaze take time to recognize you.
Tuesday Sept 27 10.45 am: The PT did a courageous job of sitting her up, moving her head, neck and torso. Then she was left to hold up, even for a while. More exercise followed until she fully opened her eyes. Considering this a first time, her floppy body did well.
12.45pm: FC and a pastor friend came to pray and after a while she opened her eyes to look (yes, look) at me, pupils scanning as if to recognize me. This went on for 5 minutes, her hands clawing for assurance.
2pm: Colo-rectal surgeon concluded that tumor does not seem to exist as seen from colonoscope but suggested a final x-ray of bowel-prep before leaving for home care. (Note: Please comment if you have a view here.)
Cranietomy (bone flap closure) and closure of stoma could be done together after regaining full consciousness and progressed motor capability, possibly 6 months after home therapy.
5 pm: "Any more bad news for me?", the neurosurgeon could hardly hide a grin as I needled him. Apparently the worst have already passed:
1) She can be described as "being in a vegetative state with cycles of wakefulness and coma". Continuous coma for periods of about 2 years are termed vegetative.
2) As she is slowly showing progress, treatment will be considered in any exigencies for now. After 6 weeks from September 1, if her condition does not improve, or worsen, the back-off rule of treatment will be decided by me in consultation with informed family members or caregivers. The 6 weeks period itself can be revised based on physiotherapy and other progress of consciousness, in like consultation.
3) Plans are in place to have her discharged for home or therapeutic care in two weeks.
4) She is almost certain to be bed-bound upon discharged with full dependency care, but her progress does depend on her state of gaining consciousness and therapy.
5.30pm: She awoke during examination and she looked at me with both eyes. I can never forget the look.
"Kian, I am not afraid of death, but I really dread lingering suffering", that look made me remember those words from her during better times.
Wednesday Sept 28 3.45pm: The day is half gone and I have nothing to say.
6.30 pm: V arrived with children in tow to cheer her. Eyes opened aimlessly after physio done, despite Z's encouraging shouts. Looks like her conscious recovery flows and ebbs. Will have to wait for a better day. The corner to be turned seems a distance away.
"We are waiting! we are waiting!!"
2pm: Got back from lunch to see her back on bed, eyes opened. Seemed to scan the environment, though right eye still slanted left. I approached her and she scanned my face curiously for a moment, then shifted to the sunlight. Again I called her and she shifted back momentarily. Then both eyes now moved to the left ceiling. For 6 or 7 minutes she looked. Then it hit me. She doesn't know me. For now. The machine beeped. Sensor moved but the heart rate went up. To 114 bpm. ECG please.
Friday Sept 30 1pm: The PT worked her and told me her eyes opened. But when I got back from lunch with a visitor, she was seated unsupported, tired out and eyes shut, for a good hour. That remained so on bed for the rest of another uneventful day.
After-note: Got a call at 10pm that they were fully open when niece V&L, family doctors L&MY dropped in.
Saturday Oct 1 8am: All the prayers have enabled us to crawl out of debilitating September. She belongs to the group whose eyes open only after the 4th week. Good recovery prognosis for openers during the 2nd or 3rd week. There is hope yet, although the usual dark prognosis on left temporal damage came from the latest ct-scan. 3 weeks thereabouts to discharge.
11 am: She tires all of us out when we give her Physiotherapy. But she does not even open a slit to see AC and JB, AC and WW. However Si, KC and wife got a slit welcome. Then at 4pm more of us got tired exercising her and she rewarded us with more open eyes to greet ZeeCheah, grandson and J.
Sunday Oct 2 10.30am: Barium NMR gastrography scheduled for Monday to complete the colon exam. Also trachea weaning starts to complete Thursday. Miranda is unconscious and is likely to be discharged bed-bound in a couple of weeks. She will require frequent interactions during the wakeful cycles to regain speech and limited cognitive skills. Only with full consciousness will she be wheel-chair stable for motor rehab, etc. When will that be? The Lord knows.
3pm: Self-quarantine (flu)
Monday Oct 3 9am: Running nose stopped mysteriously to put me back on watch. I had watched her silently from the bedside, as if in deep sleep, mouth ajar, as she is wont to do normally. My mind flashed back to the early Friday meeting room, when the neurosurgeon returned after the miraculous recovery of her expanding brain and explained sullenly the risk of removing the huge clot - one outcome for my permission to proceed would be a vegetative state, exactly as it has turned out. I now realize that the neurosurgeon wasn't brain-washing me to be prepared for the worst. But at that compressed point in time was the most heart-wrenching decision I had to make in my life, leading her to something she may never want, now or in the future. It is, on hindsight, the right decision, I've left the door ajar, for God might yet do another miracle. Slamming it shut would be most convenient for me and others but it will leave me with nightmares of "what-ifs". So now we are still waiting...
2pm: Came back from lunch to see her lying there eyes open. Her eyes seem to have a pleading look, like she needed water for her dry throat, jaws grinding. But there was nothing I could do until swallowing is purposeful. Found out that earlier she had failed the trachea test - her BP went too low. Could it be the after effects of the gastrography? Results not in yet. For that she even missed her PT exercises. Heart-rate went 114 as her arms and fingers curled up like giant rubber-bands. Later (5pm) BP became low, and temperature high of 38. Not a good day.
Tuesday Oct 4 9.15am: The skies have been weeping too. I arrived late to see her lying there eyes fully opened. I hurried with the soaping. After drying my hands I frantically looked for her spectacles. As I placed her on she seem to be able to scan the scene, pausing here and there on the framed pictures and window outside. This time she looked for 25minutes. But her fingers tightened and her arms taut as cables. Heart beating fast but the fever spike subsided. She turned her head when the OT opened her fingers. The most disturbing was when she looked straight at me sticking her tongue and moving her jaws..there was nothing I could do for her dry throat, if only I could offer her the coke.
11am: The stand-in PT worked her with me, sat her on the bedside and got a good BP. Her head droopy she looked like a lifeless doll. But it was progress.
1pm: She opened her eyes again - the third time over 5 hours, peering through her specs. Visitors are encouraged to stimulate by interacting with her opened eyes. That seems to be the next avenue to advance her neurologically.
Looking at her shriveled left lobe I cannot help but wonder what part of her will we be missing. One finding says that "Left side lesions (in the left temporal lobe) result in decreased recall of verbal and visual content, including speech perception". Miranda is not an oratory giant, but her choice of words in clear thinking above muddled emotions have resulted in decisive leadership. Being a person of her word, her strength of character shines through them. I saw this in the visitors' faces the day after the craniotomy, when her left forehead was swollen bloody. The women had a rush of tears and some men looked with eyes welling up. Here was their confident leader with knowledge weaved into masterly decisiveness lying broken and vulnerable. And then there was her logical prowess, speeding along ahead of most. Now but a shriveled shadow. Her objective, deadpanned approach to multifaceted problems was definitely left brain. Whither has it gone? And then there was her memory. She would recall in amazing detail what we were doing on my first birthday of meeting her some 30 years ago. Directions of places where she only went but once years before, clearly etched on her mind. Then her commanding presence, confident when faced with a critical decision, backed up by her memory banks. Is it still there?
Husbands at critical points of life may ask "Who is this person I loved? And who is she now? Can I love her again? Will I?" It may be too early to ask. But it dawned on me that the battle has only just began. Or is it a long war looming? Then the words echoed - "Better or worse, in sickness and in health..." - we are commanded to love as He loves us - unconditionally. End of discussion.
Wednesday Oct 5 11am: The PT, OT went through their paces. Sat her on the bed, limp as before. But sitting on the recliner seem to be relaxing. Gastrography show discontinuity in lower intestines, but surgeon decided fleet enema will do, followed by Xray to complete the process. Trachea spigot challenge to resume next week.
7pm: Heard that V&L and children had a great 70 minutes interacting with opened eyes. What the neurosurgeon ordered. But I had no heart to remind them that she sees but not perceive.
Thursday Oct 6 9.30am: Before I could do my usual starting monologue she opened her eyes during feed. Then closed shut till the PT sat her up and did the thoracic turns. They then lifted her to the recliner where she will sit contentedly for two hours.
12 noon: Had my first lesson on diapers and stoma bag management. Miranda doesn't mind, at least from her reaction. After that I thought to myself - that was the most decent thing I could do for her now. I am aware that some friends of hers might be angry at me for not doing enough and letting her extend beyond herself to end up like this. To an extent I stand guilty. Because Miranda is not one to be led about if she has the means. Their anger and my guilt now do nothing good.
Friday Oct 7 9.30am: Again before I began she opened up, and it became less of a monologue. But after the workout and suction by the PT, her BP dropped even to 102/53. The recliner position was abandoned and she returned horizontal. A comatose person cannot tell you if she is dizzy. But suction fluid clear. Leaky stoma bag. Visitors note eye-opening times are 9.30,11am, 2.30 pm,4pm and 8pm, for now. A clarion call to stimulate her visually, as it will do what may not be done neurologically - "reconnect the brain". Wear bright clothes, she'll look you over.
1pm: Her right fingers straightened - the second time I've noticed happening, as if she was swinging a ratchet on her left hand.
5pm: V brought her children and little Z noticed two bits of dried blood no less than 2 meters away stuck on the opposite wall from her trachy spigot . Quite a shot.
Some visitors have said they came to visit me too. How was I doing? I recall the story of a dog lost during the March Japan tsunami. She had a mate that appeared dead next to her, but she stayed whimpering in encouragement. Ever so often she would run off, looking for scraps or something, but returned to his side, nudging to resuscitate him. Many times doubts and a pall of deep sadness are overwhelming. I had to be strong, the visitors said. And so I ride out doing the numerous errands - looking at beds, planning renovations, seeing the lawyers, insurance, checking bills, nurse-maids and banking besides catching the doctors in their rounds to make informed decisions. The caregiver seems to be the extension of the nurses too, ensuring no infections, helping and informing visitors. But I have helpers. Like that dog I return to her side every morning, hoping for wide-eyes. Theirs was a story of great fortitude, and it applies to all creatures. Be that knight with a blue shield, slaying dragons against her recovery.
Saturday Oct 8 9.45am: Sleepy head. Even after physio. Nothing today.
Sunday Oct 9 9am: The alarm shows a heart-rate of 114. Traces of blood coughed from trachea tube. Stoma bag filled into a cylinder with gas about to burst. Nurse please!
Monday Oct 10 9.45am: The skies to me are crying more nowadays. I sat there silently watching her - the top of the trachy-pipe making circular motions with her breathing cycle, her sunken skull gently throbbing. My mind drifted.
She is called a terrific person. Let me share what is it like to live near the fire.
She is in all points more likeable than myself. Everyone lauds her openness and generosity. Acutely aware of the feelings of every living being, she would be the restraining factor of my outbursts. But let me just say that her generosity has its limits. Miranda has her favorite persons. As well as her despicable ones. And she often roots for the underdog - worthy ones.
Last week,in the morning bus I could see people standing stoically, staring blankly at the moving windowscape. Rows of commuters each one with a CPU humming away in their skulls. It controls all life - from the vital breathing apparatus, the digestive muscles, the motor balance as they sway this and that way in traffic, among others. Most of all, it defines consciousness, cognitive awareness, recognition of a face they bump into and the instinct of avoiding danger. They were not zoombies, but could easily be. How fleeting, temporal! One weak vessel in the skull could hit you like a thunderclap and the entire body decommissioned. You would not even wish it on your worst enemies. The seconds of our life tick by but we think nothing of it - the brain ticks on, orchestrating the vital functions of breathing, feeling, seeing - all consciousness. Really really thankful for a ticking brain!
10am: It happened again - almost imperceptibly her left fingers moved, then her right arm lifted, clenched fists. What can we read in it?
4pm: I flew back to her side to tell her what I did today, correcting a mistake I made in choice of lawyers. Often I tell her of my misdeeds, quite reassuring. The MO came to change the spigot size to 4mm from the previous 7.5, one reason why she failed to wean it off this morning. They asked me to leave, sparing me the agony of seeing blood on her neck.
Tuesday Oct 11 9am: The taxi was determined to run me over as I struggled over the rain- drenched road. Must avoid sorrow upon sorrow, I thought. When I walked in she was awake, looking at the ceiling. Dropping everything I started conversing. It went on for nearly 40 mins. I whispered to her the new "toy" I planned to buy for myself next week at Funan. Then SC and later D walked in, pleased as Punch seeing her opened eyes. The PT, another new one came, exercised her and started the spigot test - 4, then 5 till 15 minutes. BP ok, heart-rate ok. With the trachy-pipe shut she is now breathing through her mouth and nose. Will try again this afternoon. Looking good - maybe we are on the right road back after all.
<to be continued> Starting Over