Mobility Crevasse - Challenging the Limbs

I can never forget the look on Miranda's grim face the day of the burst aneurysm as her left brain fought valiantly against the haemorrhage. You can compare it to a burnt motherboard on a computer. The controlling software went absent - there were no signals to attached devices, even though they were not damaged. Where this analogy ends is the hope - the human brain is known to have some level of self-healing that is not completely understood medically today. That is why we persist in getting her attached limbs and unused muscles toned for the moment when some day, signals again come from the brain. All the hours of therapy and massages will be worth it. This past two months Miranda hardly progressed in her speech. We seem defeated by the speech mountain and we have to return to overcome it one day. On the same tough road to recovery is the need to restore use of her muscles. Have to cross this crevasse.

Friday May 18 11am: Yesterday was Miranda's last day of employment at A*Star, where she founded and grew the Institute known as BTI. It was also a busy day for her as the neurosurgeon re-calibrated her VP shunt to allow bigger orifice flow, having seen from the CT-scan that her ventricles were fuller than before. The Speech Therapy was nothing more than counseling - she is still not ready for oral feeding and much dependent on oral hygiene and precautions. Her infections have subsided - the left eye less red and the groin swelling reduced. So on the road we plod. This month we will try standing Miranda more on her feet and to challenge her arms.

Sunday May 20 8am:
"No one cares for my soul...I cried out to Thee, O Lord thou are my refuge.
Give heed to my cry, for I'm all alone. Bring my soul out of prison, so that I may thank you. The righteous will surround me and you will deal bountifully to me." Psalms 142: 4-7

Monday May 21 11am: Last evening group of 9 elders came to break bread round her bed. She was all eyes. Throughout the entire time. Probably tensed up wondering what is going to happen to her in the seriousness and ritual of these men standing around. But this morning she noticed me and relaxed. She needs a lot of calm, personal interaction, something her friends (and family) can provide at this stage of recovery. I think she is moving towards MCS (minimally conscious state) from persistent vegetative state (PVS). That would be something to praise God for.

Tuesday May 22 11am: Her stiff limbs are not contractures, as they can be relaxed by massage. Probably the brain's recovery phase (?). The advice for coma patients is to massage the static body as frequently as possible. Here is an area that I am completely alien to - and Miranda is certainly the last person to rush to a massage parlor in our past holidays. But to get the limbs supple it is a necessary skill to learn.

Wednesday May 23 11am: She cried out last night - like one of frustration. Have to find out why she's salivating so much and even choking on her saliva. Left cornea not healthy, shedding some tissues. Hope that it cures completely. More alive today.

Thursday May 24 2pm: Didn't know that her air-con broke down till late last night. Poor girl - didn't have the means to say so and the maid clueless. But she's a toughie - managed to gaze at me this morning and opened her eyes willingly most of today. So now we will massage all her limb muscles and have her stand longer on her feet, with the knee restrainer. Unusually hot night and desperate for cooler air I prayed for rain.

Friday May 25 11am: Thank God the rain came at 3am. She'll not have air-con comfort till Saturday. Rain again tonight?

Saturday May 26 8am: She slept through the fans. We inveterate air-con sleepers are at the busy serviceman's mercy in hot seasons like this. After the air-con was fixed she looked fixedly on 2 former AGA students of hers, trying to recognise. Back to the sleep routine again.

Sunday May 27 6pm:

"Turn and be gracious to me, for I am lonely and afflicted." Psalm 25:16

"Even though my family is not with me, the Lord will receive me." Psalm 27:10

"And surely I will be you always to the very end of the age." Matt 28:20

Monday May 28 1pm: Despite her deep sleep since Saturday I can still feel she could hear my voice. The lips relaxed, eyes then opened briefly before shutting them again. She's like saying "I see you and I know but I still need to sleep!". Today I extended her standing position 15 minutes to develop her flaccid calf muscles. Still coughing on her saliva.

Tuesday May 29 11am: Got to briefly open her eyes and to watch her favorite "Sound of Music". Her left eye, still wet seems better, but her salivation continues. Some old friends came to maintain eye contact. She would open her eyes in our mid-conversations, as if interested in the banter. Miranda loves food and some dear visitors have brought me delicacies that she loves. Thank you! and for other presents too. But I do feel a bit of guilt enjoying them while looking at her, inert in her wheelchair or bed.

Wednesday May 30 8am: A friend told me vivid dreams about talking to her again, in long, level-headed conversations. I have this constant echo in my head - "Kian-na lets do this...I don't think I want to do that..." Its like neural synapse transfer.

 Lake Tahoe 1990s - Good to remember the times when we have every cylinder firing.

Thursday May 31 1pm: Some visitor prayed the other day that God in His time will turn on the switch to her consciousness. What a refreshing prayer! Her sleep cycle is now double the normal diurnal - sleeps every alternate 24 hours, and then opens her eyes occasionally.

Friday Jun 1 8am: "Com'on keep fighting! You're getting better!", I urged her as she struggled hard opening her wet, sticky eyelids. Earlier she had laid back contentedly on her bed after therapy and a hot bath. It was a hot night with cool morning showers and I had to get up early to ensure the air-con was not becoming too cold. I'd decided to pray for only one thing each night - starting with her will to go on living.

Saturday Jun 2 7am: As I stirred from bed I used to hear the car on the driveway at the crack of dawn as she came back with market delicacies early Saturdays. Not anymore. She laid distorted on the raised hospital bed with her hands clenched, nursing her brain in fidgeted sleep. But her left eye seemed better as she peeked at the TV screen when I turned on. Today my prayer is that she'll voluntarily move her arms more.
"Grief is the price you'll pay for love." - HM Queen Elizabeth II

Sunday Jun 3 8pm: "Meet you at the golf ball", Miranda referring to the giant water feature we used to wait for each other after our showers. But these days I come straight home unless I fancy eating after golf alone. The nearest she get is watching golf on TV. I wonder whether she could track what she watches? That's a prayer.

Tuesday Jun 5 10am: Yesterday was a complete day of rest. When she came to this morning she was totally disorientated - like she's never seen me before. I've determined that from now on, when her eyes open for more than 5 minutes we will administer the NACD program (package of stimulants relating to smell and touch). Thank God we've finally rid her of tongue deposits from her reflux and her left eye is on the mend. But there must be some more active way of preventing decline of her mental capacity.

Wednesday Jun 6 2pm: A curious thing happened this morning at therapy. When I buttressed her arms on the bed and let her, sitting, lean on them, her eyes opened fixated. I then softly whispered that that's how she strengthen them she looked at me. I wonder whether I've hit the spot on her brain preventing any of her arm movements. I pray that it will be revived.

Thursday Jun 7 11am: Came up with idea of stimulating her mind and prevent mental decline - watching movie re-runs with her.  I've forgotten most of Hawaii-5O but by watching and discussing (one way) with her, she kept her eyes opened throughout the episode. She even closed her eyes during the adverts and resumed with the story. Happy day!

Saturday Jun 9 8am: Yesterday was another dismal day of sleepiness, so this morning her eyes opened for some daylight. As she has totally immobile arms there's something else to watch out for - mosquitoes. Must warn the maid to watch the bite areas as the last cellulites swelling at the groin must be due to some bites. A serious vector infection may imperil her life.

Sunday Jun 10 8pm: Contrary to expectations she kept awake most of today. So after a while I rushed to her side to ensure she is not lonely without any visitors. But her eyes glued to the TV. I then realized that I was the lonely one.

Tuesday Jun 12 2pm: Yesterday was uneventful, except she still opened her eyes for visitors. Today she remained wakeful and even uttered something during therapy. Strange that her right arm is now more active than the left, given that her left brain is impaired.

Wednesday Jun 13 10am: The gall of it! After months of hospital rigour the maid still did not self-quarantine when she was sick. Had to send her out of Miranda's room. Fortunately it wasn't flu or something infectious as it could be the death of her. The medical back-off treatment rule still applies - as she is still comatose.

Her favorite fruit (1980s at a small Malaysian town)

Thursday Jun 14 5pm: Today is her off day again, sleeping. But more so on the wheelchair than horizontal. Like to believe that rest is the mode for left brain repair, as now she tends to turn to her left a little less, indicating a less dominated right side.

Friday Jun 15 9pm: I was wrong. Last Thursday I thought she could follow a story on TV. But today she stared through the commercials as though they were part of the story. Then I had to switch it off so that I can make eye contact. Alas, she is still in coma.

Sunday Jun 17 10am: So despite all the provocation to wake her yesterday she continued sleeping during visitors. But this morning I found her knee lodged tightly against the bed rails - over-active legs during a hot night. What can I do? I cannot watch her 24/7. Besides kicking is good against bed-sores as she is unable to turn herself.

Monday Jun 18 2pm: Her office stuff came home today. As I peeked into the boxes there was a lump in my throat.

Wednesday Jun 20 11am: A difficult yesterday for swallowing, and still struggled a bit today. But she seemed pleased to see me after showers. More wakeful for visitors, indeed opened her eyes for most of today.

Thursday Jun 21 11pm: Not only was she engulfed by sleep, she could only stare blankly into space at visitors after being awoken. Also had to turn her away so as not to be bewitched by constant staring at the TV. I was so aggrieved that had to leave the house for a break.

Saturday Jun 23 4pm: She started the day crowing something unintelligible but a good sign for speech unlike yesterday's staring into space. Looking normal, except she still does not engage people. Guess that has to wait.

Sunday Jun 24 8pm: She's able to look more to the right and stayed awake for most of today. Prayer wish: that she may utter something consistently.

Tuesday Jun 26 9pm: She was visibly pleased yesterday when her close doctor friends stroked her face. Rather than recognition I thought because she's been alone and company must have brought joy. Or was I the loner? It's hard to tell her feelings.

Thursday Jun 28 2pm: Yesterday had to quarantine myself, probably caught a bug at the dentist's. This morning I could hear her crow of frustration. Not of sadness but a plaintive cry. She has started to cough out the salivation, a positive sign. The encouragement to fight on (myself included) has become a daily prayer.

Saturday Jun 30 10am: This morning greeted me with some garbled noise. But I can sense she's getting weaker because she used to be able to turn her head toward visitors. Must strengthen her with some beef soup. She's more alert on bed. The grind is getting on to me too. I must rejuvenate.

< End of post >. Continue in July