Wednesday Nov 2 9.30 am: After RD examined her, OT put her on tilt in-space wheelchair and did some stimulation tests after touring the surroundings. BP dropped 115 to 95 and she had to be returned horizontal after 30 minutes. At 11.30 entertained some visitors with half-opened eyes and slept till 2.30 pm. But she will respond by blinking more than once to say "no". RD has recommended closing her stoma to assist in rehab and cranioplasty to replace her skull flap scheduled for December 13 was questioned.
5pm: Distinctly heard a gulp from her throat. Was she swallowing?
Thursday Nov 3 9.45am: She will have about 1 hour of full opening, then next hour would be half open and droopy eyelids. 6pm: She seemed keenly listening to the Bible reading DVD for an hour, then dozed off. At 7pm tried something different to stimulate her emotional right lobe. Kissed her on her cheeks! Eyes then opened to find out who.
With Prof Morris Wayman (PhD Supervisor) & Mrs. Wayman. Toronto, 1980
Friday Nov 4 10am: Tested wheelchair and commode for purchase, but BP failure (110 to 87) prevented further tests. At 1130 PT moved her to the tilt platform. Lasted 20 minutes at 60 degrees. BP fell from 138 to 90 and then 85 (on return to bed).
4pm: Nurse tried small sips of juice and could coax her to swallow. Hopefully no more convulsive throat suctioning from now!
Saturday Nov 5 9am: Self quarantine (bad throat)
4pm: After sitting on the recliner for almost 4 hours she was hoisted back on the bed. When being set down we heard her groan for the first time! So far she scored zero on verbal response and hopefully this is going to change. But her speech recovery is tantalizingly slow.
Sunday Nov 6 10am: Sat up from 8 am, to be for 3 hours. Decided to wet her tongue with coke, her favorite brew. Speech therapist advised caution for liquids (severe dysphasia affecting swallowing). Also low blood albumin resulted in her swollen hands. Must exercise her, since PT would not be around for the long weekend.
Monday Nov 7 2.30pm: Sat on the recliner again from 8 to 11, but slept the rest of the afternoon. Unable to fully empty bladder again. This is hard to track - when is it full or empty?
5pm: Wanted to kiss goodbye for the day. She awoke so suddenly, eyes fully opened as if she had seen an angel or ghost. But it was transfixed somewhere else behind me - like a zombie. Even frightened me for a moment. Then she settled down to recognition. What has happened to her brain?
First meeting (CNY 1975)- "I was sick that day."
Tuesday Nov 8 10.45am: Put on the tilt table and pass 50 degrees with good BP. Eyes opened wide when transferred, but not like the "death look" of yesterday. Rested tired after the hour-long process.
Wednesday Nov 9 : Self-quarantine
4pm: Found out (third hand, thru the nurse) that the RD plan is to have Miranda discharged for home visit therapy within two weeks. She will be home for Christmas then. But this is not necessarily good news.
Thursday Nov 10 830am: Two more weeks training of nurse maid in bed transfers, feeding, detecting urinary problems as well as swallowing. Meanwhile equipment will be ordered for bed-bound care at home. Will try giving her a hot shower once the tilt commode is available. Stoma bag will be retained. But swallowing rehab is now in progress. The ST(Speech Therapist) also said that the blinking response that we were so excited about is inconsistent. What a blow! RD cannot give speech rehab till more appropriate response is forthcoming. Even when she goes home! Personally, I will say that more could be done by TTS rehab than to be send home for rehab visits. This is becoming a very difficult corner!!
Saturday Nov 12: Her eyes will now open any time we exercise her (or if someone kisses her). Therefore she must have come out of a vegetative state? Her eyes can only focus for a few seconds, but she has no way to telling you whether she recognises you. She must be able to hear - the nurses will always tell her what they will do, otherwise she will appear startled if a thermometer is stuck into her ear, or a toothbrush into her mouth. Pray that Miranda will soon be able to have a definite Yes/No response. Otherwise there is no handle with which to manage an active rehab, even at home. An unused brain in an unused body will settle into a permanent state of disrepair.
Sunday Nov 13: Self quarantine. Hoping there will be more visitors today, I am staying home to fight the sinus flu.
1pm: Heard that Miranda had her first hot shower in 10 weeks! She loves hot baths.
Monday Nov 14: What are the chances that she will have a definite y/n response this week? If so then I should consider her extending her stay at TTS or some other rehab hospital. If not, then it will be bacteriologically safer but less convenient medically to convalesce at home. This must be the parting decision I must make with the Rehab Doctor. In both cases we should start active rehab ASAP.
Noon: Spoke to the rehab MO. Looking at going home after Tuesday next week - Nov 22. At around 2pm the MGS bunch again came and cheered her onto the upright chair. Sat there only for less than 15 mins, then the BP faltered, while she snored. But we all know that the stroke has tragically stolen her usual cheerfulness and hospitality. Hope to see you awake next time!
Tuesday Nov 15 10am: The tiltable commode tested well but I was overawed by how much is involved in giving a shower to a totally inert person! The good news is that the tilt keeps her head and BP in place. The challenge involves drying and changing into hospital garb that is not easily changeable in supine positions. All these done while the BP keeps within range. You can actually see fear in the wide opened eyes if she is being hoisted, turned or moved extensively. So now we are all ready for home care - Miranda settled so comfortably after hot showers and all equipment on the way. Now for the home visit schedules of PT, ST and nurses. Plus the list of transfer logistics.
Wednesday Nov 16: Two medications madopar/levodopa and piracetam seemed to have helped her gain more wakefulness (as opposed to awareness). The former suppose to enhance her memory and the other to help in her dysphasia. Then there are others to help in the muscles (baclofen?) and digestion (domperidone?) as well as dopermine (brain).
10am: After a refreshing hot shower she got on the tilt table, eyes happily opened. Passed 40, 50 and 60 degrees.
2pm: Getting frustrated not being able to discuss progress directly with the Rehab Doctor - been 2 weeks and she is still inaccessible.
Thursday Nov 17: The dogs have been peevish and testy yesterday. Skipper, who was closer to her when our beloved Pi died weeks (I am still grieving Pi) before the stroke has been attacking her daughters. Maybe time for Miranda to go home and calm the dogs.
9.30 am: It happened again - she was sleeping so peacefully one moment when in the next her eyes will half-open, glistening and glazed, looking sullenly downcast.
My thoughts went to the Great Enigma in Job chapter 29,31. She will not lie there, fossilizing and wasting away. Yes - even though acts of kindness are not zero sum gains, Job eventually came forth as pure gold. But Miranda is still in the process and God will not be pushed. But these are just my thoughts:
For my days shortened and consumed like smoke, my bones burned as hearth,
My heart is smitten, withered like grass...bones cleave to the skin,
For I have eaten ashes, my drink with weeping, Thou lifted me and cast me down,
My days like lengthening shadows, I am withered like grass,
But Thou O Lord shall endure forever, rise and have Mercy and favor,
Regard and not despise the prayer of the destitute, hear the groans of the prisoner,
To loose those appointed to death. Psalms 102:3-12
10am: Daily hot showers are the order of the MO? Does help in promoting wakefulness.
11am: Sat on the recliner until the hilarious JG went home at 3. At 4 the OT went thru the bed transfer rehearsal.
Friday Nov 18 7.30: Rushed up early to the hospital in appointment to meet the RD at 8am. But alas, she didn't turn up. Stood me up again at 12.30pm. Miranda looks more wakeful compared to yesterday but attention span less, e g 9.30 to 9.45am.
Saturday Nov 19 9.30am: RD discussed the following:
1. More advantageous to recover at home for a month before review in Dec 11 when she will need to return for cranioplasty on Dec 13. This will train for home care with attendant PT starting end Nov, 3X per week. PT will look at swallowing and chest. Cranioplasty should not be postponed as implant should be done once material arrives.
2. Auditory (music) combined with visual stimulation therapy should begin at once and especially at home. There are positive signs that her brain-stem functions are returning, albeit rather slowly. Colostomy bag is the hindrance that prevented AMK-type rehab. To review when more awareness allows it to be closed, so that robot-based rehab be possible.
3. Can try alternative medication (neuro-aid), but should watch sugar level.
12 pm: Confirmed with NS that implant and cranioplasty can be postponed to some future date.
3pm: For some reason today open eyes are limited to 9.30-10.30 am. Even when several A*Star academy staff came, her eyes were shut tight. A tight kiss to her cheeks are only worth a few seconds of opening. Maybe better tonight at 8pm.
Monday Nov 21 11am: Met up with Zaopao reporter to verify today's story. Sat on the upright 4 hours with good BP. She passed this test this time. Also managed to do transfer without the nurses. Started ordering her supplies for 2 months' home recovery. In mid January she will be returned for review at the hospital and possible closure of stoma or skull flap. Then hopefully get her into more active rehab.
8pm: Heard that she opened her eyes wide from 6pm to 8.30pm. That's interesting. For once she couldn't go to sleep so that Yanti couldn't go home for supper. If you had planned to visit this night but didn't, eat your heart out! Maybe I should change my visitation schedule so that I can interact with her fully awake these 3 hours. But she goes home Thursday.
Tuesday Nov 22 9am : Walked into her room, but there wasn't anyone -she's gone for shower. And what good sleep hot showers give.
3pm: To prepare her for home Miranda must pass the vertical tolerance test. Yesterday morning she passed flying colors. But today dismal - her BP dropped from 125 to 107 to 95 within 10 minutes and had to be transferred back to bed from the upright chair. This inconsistency is troubling. 8 pm: Not many visitors today or yesterday.
Wednesday Nov 23 9.30am: She opened her eyes on schedule. After I talked to her I decided to put her specs on. Her eyes shifted to the TV. I knew she was watching it, because I've watched with her countless times before. But she has never been interested to watch "Ellen". Why now?
11am: ST gave a grim prognosis of her dysphasia condition. They gave her 1 year before she could swallow or talk properly. One year? But we shall persist with swallow stimulation with lemon buds. At 11.30 her wheelchair weight showed good 18.8 bmi at 50.7kg and we managed to transfer to upright chair.
Thursday Nov 24 9.10am: This will be my last entry in the post. Mixed feelings stepping into the unknown. But staying 2 months in the same hospital room is no fun.
12 noon: Time to meet the pharmacists, dietitian, PT, OT and documentation nurse.
Thanks for visiting Miranda at the hospital, virtually. Sure beats infection.
<to be continued> Home Therapy