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
nice post
ReplyDeleter4i kopen
Hi Kian, how about attending the Combined Service on Sunday? PKian
ReplyDeleteThanks for your comments r4i Kopen. PKian: Her daily physio and schedule takes me from 8.30am to 1pm. Hard to commit anything in the mornings. But thanks.
ReplyDelete