Monday, 5 September 2011
Restoring the pillar
Monday Sept 5: 4pm
Praise God !! Now both legs are active and eyelids quiver. It takes an anesthetist like S to say that she is breathing mostly on her own, with minimum help!! But I would have no idea what those scope traces mean even if I can tell you how to make the oscilloscope.
Sedation is minimum and BP strong. Please go on - breathe well so that tracheostomy not needed. BP excitable so that nurse even now say visitors should slow down exciting her, but next days may be susceptible to infection. There are more hurdles coming. Independent breathing should be at the conscious level..she is God's work in progress!
Tuesday Sept 6: God deals with the outliers
Had my second nite of 3 hours uninterrupted sleep. I've been told that the chances of full cognitive recovery for her severity of hemorrhage is 20%. But that is statistics and some have done better. Come Wednesday (tomorrow) or thereabouts the team has to make the decision of tracheostomy (opening in the trachea to assist breathing). But I hope that will not be necessary. The doctors have to determine the risks of gagging without one, as she is not fully conscious. Also chest infections are notorious leading to life threatening situations. I would like to welcome expertise comments from you - please help me with an informed decision. We will deal with higher level thinking later. The real Miranda will have to re-emerge slowly, one step at a time. Ne Pas?
Tuesday Sept 6: 4.40pm "Did you see that? she's moving her jaws!" KG and L exclaimed. And her left leg has kicked itself up to the edge of the bed. The neurological GSC rating is M4 with M6 being cognitive active like "raise two fingers please...". So we must be patient as not to run ahead of Grace - she's has some ways to go before she knows who you are. But we'd like to believe she knows - something we call Faith. As if to back-pedal, her assisted breathing from the ventilator is now increased at night - just a precaution?
Wednesday Sept 7 3.20pm Here is more of the briefing I had from the Registrar on Tuesday. The attending Physician-Surgeon E is on leave till Friday:
Fever spikes are expected (last nite T=38.8C, today 36C) and antibiotics continued. Probably tracheostomy (throat toilet) will be pushed back till after neurosurgeon's return. Nothing planned for the 2nd aneurysm (which was found on the 2nd scan), as its size (based from a 1998 study) has v low chance (0.5%?) of rupture and its location not as threatening. Recovery status probably better than 5 on Friday. Tough cookie even pushing her right leg. Edmund, care to add?
Wednesday Sept 7 9.10pm Like two small leaves quavering in the wind, the shut eyelids are now quivering more as you speak. One would have hope that it becomes the last scene of "Avatar" but that is probably not how the neural synapses connect. Only God knows how the brain recovers, since that must be how they were formed when we became conscious and came into being. Quite an experiment to find out isn't it?
Note: From Steven Tan's comments on Prayer schedule blog:
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139:13-14
Thursday Sept 8 9.30am Overslept but didn't miss chance to see her moving her head, ever so slightly, and some throat reaction. Everything else same. The call came at 10. Neurosurgeon E say better to have coiling done now, on the other aneurysm, since it is risk-compromised by other earlier rupture. Slot at neurological-diagnostic radiology (NDR) at 11am. After some more phone discussion the NDR surgeon came and was given a clear briefing, procedure, risks, results. Called with S and L and decided to proceed.
11am : She is now wheeled to NDR operating theater and under GA for next 2-3hrs. Please note no visiting until 4 or 5 pm. Watch this space.p
13.35 pm Got the call from NDR NeuroDiagSurgeon that coiling has completed and be back ICU. Visitor-ready in couple of hours. Some vascular spasms are seen that may derail things later, but risks from haemo-dynamic pressures are greatly reduced. So be guarded.
4pm Latest status from attendant neurosurgeon E: Angiogram shows good coil but brain spasm detected. Driving BP next so visitors will expect to see high readings. This dilated brain blood vessels from vasospasms. Another ct scan expected tomorrow to confirm progress. Need to guard unforeseen problems next. Visitors can start to pray for eyes to open next few days to 2 weeks (Yes!). But cognitive only. Have to wait longer for higher level activity response. Expect temperature spikes(sigh).
5pm: Stole away to play a bit of golf. Earlier looked lovingly at her bag where I had routinely and absent-mindedly loaded up with mine. Wonder how long she'll be able to walk the greens again.
Friday 9 Sept 9 am: Grinding her teeth? Probably another non-reproducible motion like the eyelids. She could "hold" my hand but motion not reproducible.
2.30pm Neurosurgeon E guarded prognosis:
Currently have primitive pain response, post-op CT scan OK
Two issues a) Vaso (vascular) spasm to be cleared : Next 5 days
b) Infection to be watched continuously. "There be dragons here."
Possible rehab 4 weeks, depending? for speech, motors, intelligence (dominant side). Next 2 weeks (?) in ICU to watch developments before next stage.
Longer term prognosis will be clearer within next 4 months (2-4 months)
Saturday Sept 10 10am: "Ring round the bushes and up the...", ML finger-walked up her left arm. Her face broke into a faint coy smile, Mona Lisa-like. I know she doesn't take to massage but she's certainly ticklish. Hope somebody can reproduce this! She is on a fuller course of antibiotics due to a low grade fever and the EVD tubing (brain fluid) needs to be replaced. If she can clear her throat more purposefully it will be more reassuring.
Saturday Sept 10 noon: Tracheostomy to proceed Monday and EVD tubing may be replaced to reduce possible infection (unknown). Vasospasm reduced to 5 from 8.5 Please note that visitors will be limited to family and close friends (very sorry) for next week or so. But if you consider you are close enough to visit please feel free to come cheer her up (such as what ML did) and I would vouch.
Saturday Sept 10 ?am: "Hello Sally this is Miranda", "Whoa where are you, you woke up?" S gasped on the phone. "I 've awaken long ago - was with you people around the ward. Technology in medicine has enabled me to make this phone call." Then S awoke.
Sunday 9am: "Miranda move your eyelids if you can hear me". She did. Then IC repeated the request after the eyelids were still. She complied. Three times.
12.30pm: HH and J came to speak to Miranda and J started to talk to her and stroke her left arm. Then a muffled sob, her expression appeared like crying.
Monday Sept 12 9am: Tracheostomy postponed for further observation. Pray that she can cough and clear her throat purposefully. Consultant neurosurgeon (CS) prefers her to breathe consciously. Fever spike. 4pm: More eyelid quivers for favorite grandnephew.
5pm: X-rayed the bloated abdomen. Wheeled for ct scan to ensure the bloated intestines are ok. Probably small irritation as still flatulent.
11:45pm: After swallowing the sleeping pill (hope I'm not addicted to it!!) the call came. The intestines are blocked and needed intervention. Not life-threatening. Watch this space tomorrow after the 8am meeting with the general surgeon:p
Tuesday Sept 13 7.45am Colon-surgeon gave a dark prognosis of what the lower large intestine block may be. As she's in coma best is a colostomy a redirect out to an external bag. Biopsy when she recovers. Tracheostomy and redirect of EVD (brain fluid) tube will be done just after the colostomy. Lord!
10.30am: Wheeled into theater operations to last 4 hours. Pray.
Medical notes: Growth "mass" located at splenic flexure restricting the lower large intestine. Too risky to remove or do biopsy or even colonoscopy. Question: Why no earlier symptoms of blockage when healthy? Why now? Post-operative biopsy and subsequent intervention is possible and colostomy "bag" collecting the diverted waste can be reversed and sealed. At the same operation the ventricle functional shunt tube that returns brain fluid to somewhere in abdomen, under the skin. That and the tracheostomy will last some hours. Nobody knows what the "mass" is, whether it is malignant, etc, until a biopsy is possible.
4pm: Completed colostomy with minimum blood loss. Starting to clear left & right of it. Tracheostomy took a longer time but finally in. EVD tube replaced.
6.20pm ColonSurgeon said she's still bloated so will review her case if persist. Cancer markers negative but real joy only from biopsy when she's ready. Using the stoma for colonoscopy or endoscopy.
Medical Notes: Drs S, L and M discussed about the blocking "mass" or swelling may be edema. Albumen was noted to be low. Comments?
Wednesday Sept 14 8.20am Faecal matter still stuck in Xray, advised to wait&see. But troubling signs on right lung. When vf shunt to be inserted next week(?) then perhaps an endo or colonoscope can be inserted around same area. An odd prayer request-that she moves her bowels. Will update what's happening in the lungs...
1 pm update: Xray artifact no pneumonia. Also vasospasm gone and BP now normal. Waiting for bowels to move.
5.25pm: CT scan came back normal so condition unchanged. "No news is good news for now". But neurologically this status quo cannot be good long term.
Thursday Sept 15 8am:
Gut Plan - gas is moving but time needed to move faecal matter. Bloating reduced but not completely decompressed. Stoma to be replaced and when intestinal walls stronger and rested will colonoscopy/biopsy be done (next week?)
Head Plan: Neurologically still hover between NSC rating of M4/M3 (slightly better than last rating). Left area of thalamus still not fully recovered, so she is not able to wake (open eyes). Since vasospasm is almost nil, BP will be slowly lowered. Everything human has been done, now only God can recover the brain. The worst prognosis is that she'll be completely bed-bound.
Protection: Still challenging the EVD tube (fluid draining from the brain) to ascertain its requirement. Infection very little signs so far - lungs are very clear (thank God).
9pm: The smell can be overpowering as you enter the room. Can only be good for her as decompression must have relieved her abdomen. But if only I can relieve her dry throat as she sleeps mouth open. She moves her mouth but must still be dry as bones. Poor girl!
Friday Sept 16 10.30am: Her bowels moved and stool in bag! Thank God. At least now they can feed her normally, wait for intestines to settle and strengthen, then do investigation. Neurologically jury still out. She's moving her mouth and trying to clear her throat or wet it (don't know). More news at noon from neurosurgeon.
12.30pm ICU briefing: Breathing improved so "trach-mask" tomorrow without hose encumbrance. Hopefully rest of blockage released as faecal matter rather than "tumor". Regular gut feeding tomorrow. EVD challenged to 15 (equal is 20). If cranial pressure is normal at 20 then vp shunt ( another procedure) not necessary. Miranda wake up!
3pm: SE was with me next to her when we heard the sound and we broke out in praise. Decompression is on its way! EVD challenged to 25.
Saturday Sept 17 11am: Trachymask now - she's breathing on her own, moisturized throat. BP support drugs off so less tubes now into her. Still dextrosaline feed but regular gut feed tomorrow. Stomach distension soon reduced with more stools out. No infection, lungs clear. Colonoscopy Monday when guts are strengthened. Maybe HDU (high dependency ward) or even general next week. Neurologically still NTS-M3/4, so still no opening eyes yet, but EVD tube out today. Except this all the rest are good news. Thank God! Then ask that her eyes be opened!
Sunday Sept 18 3pm: Bereft of the plethora of tubes, wires and probes that goes in and out of her as well as the trachy pipe that stabbed menacingly right at her throat, she is now able to slowly shift her half-shaved head up on the pillow. On regular feed down her guts, she has started to move her jaws and appears to cough or move her tongue. Neurologically however she is on no-man's land - only able to quiver her eyelids and her upper limbs extended outwards in primitive distension. However her legs are more active and her hips could make limited upward movements.
5pm: She looks "angry" and perturbed - Is she becoming normal?
Monday Sept 19 10am: Still progressing as before. TPN feeding over to normal feed. Gut review tomorrow? Lower limbs are still more active. Temperature spike, but still low grade fever.
Visitor information: She is now relocated to bed 6 within the same ward. However as before you are advised to wash outside the ward if you intend to make contact.
Monday Sept 19 4pm: IC saw Miranda did her first yawn in 3 weeks!
Tuesday Sept 20 10 am: She is now in high dependency room 6 (same ward 3a). Neurologically still the same. Fever spike - 37C.
4pm: The possibility of a malignant gut tumor will be investigated soon sometime tomorrow by an anal colonoscopy to be followed by biopsy. The surgeons also felt that resolving this before transferring her to general ward would be better as they continue to observe her brain pressure. By now it is hoped that the intestinal swelling or edema has subsided and the gut stronger for the procedure. Pray for a safe result.
8pm: Meeting with colorectal surgeon.
Wednesday Sept 21 10.30am: Fasting has begun for 6 hrs before colonoscopy. Showed ICU team that her eyelids seem responsive to visitors' words and reproducible. This is encouraged. Wheeled away for brain ct scan to see effect of removed EVD tubing in terms of pressure.
10.45am Brain CT scan is ok so no need of vp shunt.
4.30 pm Waiting for colonoscopy to be done in bed 6
6.45pm Colo-rectal Surgeon held up, procedure postponed to tomorrow, back to gut feed and fasting to begin at 2 am.
Thursday Sept 22 It has been three weeks to today, passing like a gale fluttering open pages of a book. Odds against full cognitive-ness are rising each day. Taking a hard look with the neurosurgeon yesterday...
11am: Colonoscopy postponed again to 12 pm. Hope she doesn't get gastritis!
12.30pm Colonoscopy result: No tumor no blockage no biopsy! Thank God!
Friday Sept 23 3 pm: Continuing with the hard look with surgeon yesterday here is the revised prognosis as a result of the absence of colon-malignancy:
1). Miranda will survive this incident even if coma exceeds 4 weeks
2). Sometime within the next few weeks she will open her eyes, but incognito
3). The process of regaining cognizance will depend on therapy thence
4). She is likely to be bed-bound at the beginning of home care and fully dependent, on trained nursing maid, even up to 6 months hence
5). There is still danger of infection or relapse during coma, and after
6). Be prepared to see a different person from the Miranda we used to know, the progress to "near" normalcy depending on therapy. Unlikely to regain full cognizance because of damage to left thalamus.
7) How much is "near" depends on progress - from vegetative to some level of intelligence.
8) This prognosis may change as time progresses
Saturday Sept 24 11am: Transferred to "A" ward 13B bed 21 Note : All visitors still required to register before using the lift to 13th floor. Sanitation and mask for entry to room. THIS PAGE WILL END HERE. Blog continues in "The road back?"