Review

Every stage of repair in a brain injury should improve the quality of life. After two months home convalescence Miranda has moved from vegetative state to frequent moments of wakefulness. But still non-communicative and immobile. Except her eyes - large, quizzing and sometimes transfixed left and subject to erratic movements (nystagmus). She is back in the hospital for a much needed review for what next. Physiologically she is in stable health, therapy has kept her tone well. The first of three issues is to restore the protection of her left brain against accidents and the cosmetic appearance of her face. We will deal with other brain pathologies like hydrocephalus and seizures or nystagmus after the cranioplasty. Secondly her lower intestines have to be exercised long term. This is thought to be a minor issue compared to urinary infection risk with the colostomy closure - as Miranda is still bed-bound and un-instructive. The final issue is neural rehab - the stimulation for normal brain function recovery. The brain should not lie idle for too long - she must exercise her thinking for which she is well-known in Singapore.

Thursday Jan 19 9am: In a neuro-repair ward the neurosurgeon is like the next best thing to God. After Miranda settled in and examined he ordered "the works" to establish her medical baselines after two months from last discharge. ECG, chest X-rays, CT-scans plus turning the wheels of supporting PTs, OTs, ST, dietician, etc. Then the other senior consultants had their updates as well discussing the way forward. Suddenly there is info-overload again.

Maybe we shall fly again. When the left engine is restored.
 
Friday Jan 20 5pm: The hospital is really a likely place to fall sick. For 2 months Miranda was free of fever. Just 2 nights in the ward and she had a 38C temperature. But she looked restful after a half-hour full standing therapy. Her eyes so full and large when looking at visitors that it is almost disconcerting.

Saturday Jan 21 noon: Her swallowing skills still primitive by ST review, so back to feeding tube. Its been 2 months. I dread the insertion of a new one - she shudders and have spasms over it. But was she attempting to recognize old friends TC and EK by looking intently?

Lunar New Year Eve 9am: The family who is sure to surround her is her main pre-occupation in life. Others are her dogs and her job, in that order. But she still have to fight the 38C fever lingering in the hospital air. (9pm) So these are the things to pray about: the cranioplasty is scheduled for Wednesday and everything has to be right - no fever the night before, no undue swelling (hydrocephalus) or csf (cranial spinal fluid) depletion, the tests must all pass (synecten is a adrenalin response test). Not all test results have come in, so the jury is still out for the Review.

Lunar New Year 7.30am: Had to have special dispensation from security to come in so early but the hospital is quiet and parking ample. Her eyes were doleful - anyone must miss home if you have to spend New Year's eve alone. So I cheered her with her favorite iPod. She must have missed earpiece music for months! 3pm: Friends, nieces and nephews came a visiting replete with mandarins. I know her enough to tell if she's pleased - mouth closed with a little bit of her lower teeth showing. This time as at previous years her generous heart would have sent ang-pows flying. But just a twitch of her fingers alone would have brought joy today.

Tuesday Jan 24 1pm: Adrenalin stress test ok, but urine suggests infection (white blood cells). Temperature down but needs an infection resistance test. Running out of good veins. Otherwise she should be ship-shaped to sail into cranioplasty tomorrow.

Wednesday Jan 25 3pm: Came out of surgery 2pm after 6 hours. I was a bundle of nerves. But she was alert and could even blink coming out of sedation. Now she has a fuller face and when I shower her there is less fear of injuring her brain, the jelly-like matter under her flap of skin. Thank God there is another hurdle passed...but we aren't fully out yet. Next few days have to watch infection or bleeding and the skin has to be anaerobically sealed. But I have to tell you of yet another greater hurdle ahead...

Thursday Jan 26 10am: "No it is not infection", the MO said referring to Miranda's left face, bloated beyond recognition. "But it is going to get worse before it gets better." The next several days is crucial that she is not unduly exposed, so visitors, thanks for the care. It will be about a week before we take the next step in the review. The doctors are deliberating.

Friday Jan 27 8am: There's still blood on the dressing. Maybe visitors should stay away next 2 days. Till Sunday. Her tone is still good from light therapy. She is still immobile and she could only sigh. She's starting to utter some sounds (probably post-operative pain) but incoherent.

Saturday Jan 28 1pm: This morning we gave her the vertical tolerance exercise standing up as well as therapy missed since Wednesday's surgery. Then after her showers she looked contented and her swelling has subsided. Urine sample will determine if infection phase is passed. Visitors welcome again with usual precautions.

Miranda (back row, extreme left) featured in Australian newspapers in 1967 Girls World Basketball Competition. To enlarge and read the newsprint left-click the picture (or any picture in the blog, depending on your browser). Otherwise right-click and save into your folder, then use your favorite photo-viewer.

Sunday Jan 29 8am: She's sleepy from painkillers. Will be put on amantadine Monday, a "recovery" drug, with several side-effects. Urine clear now. At noon met with the neurosurgeon. It will take another week to see if her brain develops hydrocephalus, needing further surgery to drain the csf (last Sunday's entry) through a shunt, down the neck into the abdomen. Pray that it need not be as the colostomy closure can infect the buried tubing. Another issue is what next? If she remains in persistent vegetative state (now)for a long time with periods of wakefulness, something could be done to wake her up. But the proposed method (called DSC) is very invasive - laminatomy is the implanting of an electrode into her spinal cord to stimulate cortical regions that promotes cerebral blood flow, and hopefully consciousness from the damaged thalamus in her case. It is a long shot with success rate about 38%. It might even be a shotgun method as no one knows the appropriate spectral shape for the treatment signal. This is the hurdle I mentioned on Wednesday. Even if she responds to this extensive medical trial, she remains mostly quadriplegic. She would then know but cannot do anything or even speak about it. Then what?

From whence cometh my strength? My flesh and my heart faileth: but God is the strength of my heart and my portion forever. They that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary, they shall walk, not faint. Ps 73:26, Isaiah 40:31

Monday Jan 30 4pm: This morning she was back to her therapy routine, as well as tilt-table at 60 degrees. She seems to be more alert after the cranioplasty when she awakes, as predicted by NS, scanning at visitors. Amantadine dosage has been started to see if she improves further.

Tuesday Jan 31 11am: Amantadine shot her BP to 162/99, even when standing therapy. Today I realized that for exactly 31 years of marriage to this day she was the confidant encourager. How things can reverse so quickly!

Wednesday Feb 1 11am: BP stable with a tilt table set at 70 degrees. 2pm: She looked at Prof G, the acupuncturist assessing her who concluded possibly treating her. Don't want to sound like clutching at straws but here is a non-invasive avenue opened. But I'll like to wait until after the current modern medicine has taken its course.

Thursday Feb 2 3pm: MO broached the bad news that Miranda's scans show onset of hydrocephalus thus requiring the dreaded shunt as I described Sunday 29th. Why do the bad blows keep coming when it looks like she's looking better? The bad news come in pairs. The advice is to either close the colostomy, and do the shunt so that it will not seed any infection to the tubing or forever live with the stoma bag once the shunt is in place and needed. Looking back the colostomy which we thought came about as a medical oversight turned out to be a blessing in managing her stools. Now I would like to see it closed willy-nilly. And it will buy me some time to watch the hydrocephalus further. Pray that we can still avoid a shunt.

Friday Feb 3 10am: Spoke to NS. Would require a lumbar puncture pressure test first before shunt. Spoke to previous colorectal surgeon. Risk of infecting shunt during closure is there but closure can still be attempted with shunt in place. Jury still out. 4pm: But no matter how distressed I must not let that overshadow the fact that she stood a full hour today, half of it on a tilt of 40 to 80 degrees, BP notwithstanding. Sleeping through it must be due partly to hydrocephalus.

Saturday Feb 4 1pm: Like to see her sleeping contented after therapy and shower, oblivious of what medical challenges ahead. Her stitches are coming off at 2pm. Poor girl, her body has taken so many insults already - how many more procedures can she take? I'm actually looking forward to taking her home, comatose or not.

Sunday Feb 5 10am: The staff nurse wanted to introduce me to another patient similar to Miranda in the next bed but had a shunt recently. Seems to have significant progress but caveat is that all patients will have different responses, not matter how similar the symptoms. 1pm: Met NS and looks like the shunt is needed, but he will drain off some cs fluid during the lumbar puncture (LP) tomorrow morning. This is the 4th instance when what I wished (and prayed) for is denied: craniotomy, tracheostomy, colostomy and now the ventricular shunt. But I accept that often what we wish for may not be best. All told, she has already undergone 6 with another two operations impending.

 Serangoon Gdns Sports Club Basket-Ball team. Inter-constituency tournament 1966. Miranda is the lanky girl at the front-row, right

Monday Feb 6 Noon: LP is 13.5mm, normal 4-10mm. I need a break. She looks good, sleeping like a child. But from 7.30 to 10.30pm she stayed awake. So was it due to LP draining 31cc of csf? She was also on Amantadine. So will it be the shunt or Amantadine? Will decide tomorrow after observing her sleep/wake cycle.

Tuesday Feb 7 noon: RD (rehab doctor) suggested 3months ago to try a food supplement (called Neuro-Aid) that purportedly helps restore neurons. So now a three-prong approach: Amantadine, Neuro-aid or the invasive ventricular shunt which limits colostomy closure. I'm confused. I long to see her safely at home without having to rush back to hospital for an invasive shunt.

Thursday Feb 9 12.30pm: Had a brownout Tuesday exhausted by lack of sleep deciding what to do. There was a conflict on medication and treatment from doctors but now resolved. Also nurse-maid issues. All clear today: We will proceed with closing the stoma (colostomy) if the risk of infecting the shunt later is high, at the price of managing stools in the diapers. After a couple of weeks complete recovery, the ventricular shunt to be inserted as decided by neurosurgeon. Rehab medicine can wait till surgery is settled, except for tone therapy.

Friday Feb 10 noon: Her wakeful hours now almost normal with baclofen almost tailed off.

Saturday Feb 11 4pm: Again the colorectal surgeons baulk at closing a comatose patient's stoma with or without a shunt. Meanwhile Miranda is steaming along, unable to tell her toilet needs, leaving us caregivers stymied as to when her intestinal function be normal again. So now we wait and pray, hoping that she doesn't need a shunt after all and hoping her hydrocephalus stabilizes to cognitive recovery at home.

Sunday Feb 12 7am: So the procedural deadlock: If shunt in place colostomy couldn't close. Before shunting surgeons fear closing an immobile colostomy patient. Living forever with a buried shunt is acceptable, but rather not living forever with a bag sticking out of your abdomen. Lord help her dilemma! Pray that she doesn't need a shunt after all. Watch 2 weeks is the surgeon's position.

Monday Feb 13 8am: The damaged irrigation canals of her brain warrants a shunt, so something must give. To prevent the enlarged ventricles from hurting her brain further Miranda stands the prospect of permanently living with a stoma bag to handle her stools. But when she recovers sufficiently to request normal toilet functions we shall return to this issue. The shunt procedure, which gives her a further 5-10% of recovery may be scheduled on Wednesday. A difficult past week - had to fight a hurting root canal while reliving the dim prospect of her getting better soon. Been praying harder.

Valentine's Day 12.30pm: The usual risks of infection, bleeding, kinks and blockages were explained before the shunt procedure tomorrow at 0730am. It is true that more pain goes to the loving hearts than the sick and unconscious. To survive the onslaught transferred from loved ones, caregivers must find some semblance of sanity in all this. This is her portion in life. We have our own. Struggles in the future as we age are common denominators to all humankind's frailty.

Wednesday Feb 15 2pm: Arrived at 1 pm to an empty room. I'm not stout-hearted enough to wait 6 hours in the ward and will tend to swoon at seeing her in blood or plasters. But at 1.45 she was wheeled to recovery room. At 2 she was moved to her room, eyes wide open. Strong girl! But belching air and groaning softly. The nurse finding from BP she's probably in pain, administered codeine. Will take about 2 weeks to heal completely.

Thursday Feb 16 11am: She has stopped the painful groans, eyes more peaceful. I don't think her body can face another knife. But more easily awakened now, even noises will. Have to be extremely careful handling her stoma bag - any infection at the shunt area now could be fatal. Also the operation may traumatize other areas such as the feeding tube region.

Friday Feb 17 11am: Came from the dental center to see her focussed eyes scanning. She does looked conscious. Showed her pictures from this blog but she doesn't seem to recollect. But eyes blinking and appeared to be thinking(?).

Miranda (2nd in line) is not known to rest on her laurels. Her mother once said she threw out cabinet full of trophies to make room for better ones.

Saturday Feb 18 8am: Last week HR of A*Star came to discuss Miranda's future. I don't have to put my nose or ears to the ground to know what's coming. The next time she gets admitted to rehab we will probably go to B1/B2 beds, which are more available. At 4pm more visitors came to cheer her. She could look across the room when others converse but whether she understood the exchange is unknown.

The most prestigious award in September 2009 was the Inaugural President's Science and Technology Medal. Earlier in that year she was admitted to the US National Academy of Engineering. The number of Singaporeans admitted there as Foreign Associates can hardly be counted on one hand. But can she count? Now?

Sunday Feb 19 7.30am: Yesterday she was again left sweating under covers with the aircon off and last night she developed a fever of 38.5, but this morning subsided. Came to the conclusion that one cannot be satisfied caring for a comatose patient with a hired hand.  There must be some supervision from a loved one - someone who can read the anguish. Today with her family we should break bread.

Monday Feb 20 8am: So the conclusions from the Review are:
1) Miranda is not yet out of the vegetative state, she might show more wakefulness but she is not conscious to be aware of surroundings or to recognise or track personal interactions. Rarely takes less than a year to be out of such conditions.
2) Surgically everything has been done neurologically to give her the best chance to recover - the cranioplasty and the shunt are the last hurdles.
3) Neural rehab will still depend on her degree of cognitiveness, now low.
4) Physiologically she is in reasonable health, with continuing therapeutic care needed in her total lack of motor control as well as her limited swallowing capability.

"You will not be tested beyond your capability to bear, everyone will at sometime face the trials of severe debility occurring in one or more family members. But God is faithful, that when you are stressed beyond breaking point, He will make a way for you, so that you may be able to come out of it." I Corinthians 10:13 (IMOT)

Tuesday Feb 21 12.30pm: This is probably the 10th CT scan she had. Results came back showing her ventricles have shrunken, the VP shunt has been working. Barring any more obstacles she should be fit to go home - after the sutures come off Saturday. Still thinking of the review yesterday I don't know to laugh or cry. Praise God! The most reliable indication of any prognosis is her cognitive progress, now out of the doctors' hands.

Wednesday Feb 22 9.30am: Some visitors reported she can respond to words or actions by turning her head or eyes but verbally she could only slur or groan. Still a baby-step considering she was totally uncommunicative. The staples on her cranioplasty came off nicely today.

Thursday Feb 23 4pm: Last night a temperature spike reminded me of hospital infection. She wakes up from midnight to 3 am, but sleeps normally through the night. Easily aroused at day, but still unable to recognize even her closest friends. The latest CT scan again confirms left thalamus damage. Once a while the garish blank look left with large eyeballs returns.

Friday Feb 24 8pm: Miranda will be discharged tomorrow around 1pm. Fighting the effects of a cracked tooth, a thought just came to me about not being crushed by her prognosis:  I cannot change her back to what she was - it is not within my power to do any such thing. But I can change myself. All the things she had wished for me to be a better person - I can do. I want this for her. Though probably lost in her now, we've been together long enough to know what kind of person she wants me to be. Reminds me of the little boy who cried - "Get well mummy! I promise to be better..."

Saturday Feb 25 11am: More stitches came off and careful instructions on shunt cleanliness. Miranda now yawns with a groan and probably senses home's safer air. Thanks for visiting Miranda on this blog post. Except for "virus" cyberspace sure beats germs and bacteria.

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