Day 9 (Wednesday) - Homing pidgeon

And so, today around 1pm, Kirsten returned to her home.

She had much to-ing and fro-ing with last minute arrangements: nurses, appointments, visits from other 'mandibularians', physios, speech therapists. There was a lot of adrenalin flowing. Not the least from yours truly. The quote was 7-10 days in ICU and 2-3 weeks in hospital. Yet here she was blitzing it in half those times. Am I nervous? Am I what! Yes, she is fit and healthy. Yes, she is 32. But she is determined. She is prepared and organised. And there are two people waiting for her at home.

I eventually mentioned during Sunday that behavioural changes were becoming evident with Ally: not settling to sleep, spitting and throwing food, clinging (to her father, and to me). This was all true. But I had not mentioned it before - deliberately. Now, I thought it might 'do her good' in someone to know that as best this can be measured, Ally was starting to fret.

Maybe it was the blood transfusions during the Sunday that sped the 'healing' up. Maybe it was the removal of the tracheostomy tubings. Maybe it was beginning of active eating (albeit through a syringe or a straw). Maybe it was all these things. Or maybe it was the need for more than 1.5 hours of continuous sleep. Or the need to get away from the hourly observations all day and all night.

The doctors from all specialties gave her the all-clear to return home. The oral surgeon. The reconstructive surgeon. The general registrar. It struck me that there is no mental health team that visits patients who have undergone traumatic surgery like this. I find that a connundrum. Healing is not just a physical thing. Psyches carry scars as much as flesh does.

She doesn't sound like mummy. Nor look like mummy. Nor smell like mummy. Yet.

But mummy was the one who rocked her to sleep this afternoon when she would not settle for Ma. Ally's mental image of her mummy is undergoing a metamorphosis. She is learning the difference between books and their covers. That mummy is mummy by dint of who she is, rather than what she looks like. Ally will no sooner have adjusted her mental image of mummy to the new manifestation, than that same manifestation will be morphing back into the form of the mummy of two weeks ago. Quite confusing for the toddler.

There are appointments with the two main surgeons over the next 5 days. A community nurse is attending upon Kirsten for an hour per day for the next week. To change dressings and teach her how to shower safely. Ally has three days of day-care for the next 13 weeks courtesy of the federal government. As Kirsten is not able to physically care for Alannah for the next few weeks, we have rostered maternal grandparents to take a day each, with Darren covering the weekends and evenings. That evens out the load a bit.

Tomorrow, we engage with the stairs again. She made it up both flights by herself today, using crutches. Tomorrow, I think we will manage a short 'walk' down to Double Bay village nominally for a coffee. But really just there and back to see how far it is. I think Kirsten will still require buckets of sleep. I shall sit on the sofa catching up with my French, with any luck. I think rain is forecast for the next few days.


Now don't do a double take if you think your eyes are deceiving you. I have, indeed, adjusted all the numbering of days for this series of posts. They now accord with Kirsten's own numbering where the day of surgery is actually Day Zero, not Day 1 as I had it. So, after the little contretemps with M. Yeats of yesterday which, being generally well-disposed toward him, I am inclined to put down to the era in which he lived, let's jump into Verse 9 which is more pleasant to mine ears:

Considering that, all hatred driven hence, The soul recovers radical innocence And learns at last that it is self-delighting, Self-appeasing, self-affrighting, And that its own sweet will is Heaven's will; She can, though every face should scowl And every windy quarter howl Or every bellows burst, be happy still.

Day 8 (Tuesday) - Taking the world by the scruff of the neck!

Got an email this morning pleading for some tracky-daks because learning crutches, whilst wearing a hospital gown, left nothing to the imagination! After a quick whiz around Rebel Sport in the new Mid-City-Centre, I got stuff plain enough to suit me. BUT ... I forgot that the hospital was hot. Why are places like this so over-heated. Normal people have to strip down to t-shirt and shorts. The daks weren't too bad but she was better off with a t-shirt than the tracky-top.

Arriving just before 3pm, Kirsten was all ready for the physio for a stair-climbing session. Earlier her caste had been removed, and one of those swanky castes that resemble ski-boots was ready. To me, $100 for one of those seemed reasonable. Eager to show off her skills, she was off up the corridor whence Ally had scooted the day before. I went back for the camera, to find on my return, her in a wheel-chair under the guidance of the physio. A short lift-ride away and we entered the rehab room. The hospital is well-equipped. Kirsten was shown how to go up steps with crutches. How to up using one crutch and a railing. How to go up and down steps on her bum It is going to be tiring. Their apartment is on the second floor. Each set of steps has maybe a dozen steps, an interim landing, another dozen steps, to the next floor. Two lots of that.

The dietitian had been and gone. There was a screed about how to liquify and how to combine ingredients for a balanced meal. So much to take it. I think Kirsten will spend most of her day, preparing and eating meals. Her mouth is wired shut probably until early into September, although everything seems to have been happening early. Kirsten thinks this is because she is fit, and only 32. Yes, she is going home, but this is based on where she is on the recovery chart. She is where many people are on Day 21.

The Nurse Manager was setting up home help for Kirsten for the first week - user pays. The nurse will come in each day for an hour; change the dressing on the trachy and on the leg; and, supervise Kirsten in the shower. They are having a shower board put in over the bath, and installing on of those European shower-heads on hose.

It was this Nurse Manage, much to her severe embarrassment, who let the cat out of the bag, that home day is Wednesday and not Thursday. How sweet, and terribly affecting. Kirsten has arranged to be home for my birthday. I never want material things for my celebrations: just rather do things with people. I got the shock of my life, and rolled upside down on her bed. Luckily, she was ensconced in the chair at the time!! Really noice.

So, home help is organised. The dietitian is organised. The physio is organised. And, I left Kirsten talking with the Speechie, whom I really liked. There will be a lot of work getting the production of air for speaking back to how it had been At the moment there is a fair bit of pain in the area of the trachy hole. Not much to do with the incision, I gather, but everthing to do with the elastoplast for the dressing around the small wound. It has been taken on and off so often, in a really senitive part of the skin.

Kirsten has a cornucopia of drugs to take home with her. She mentioned to a nurse (in my hearing) that the jawbone pain was up to 7/10 again. She will have some endone and some panadeine to take home with her.

Kirsten is craving a good night's sleep and is desperate to repair her relationship with her daughter. Tomorrow, I go over early (7:30am) to play with Ally whilst Darren goes out to a client's business very close to MUH. I muck around with my grand-daughter whilst Darren does a smidge of work, then bowles into the hospital, picks up his wife and brings her home to Double Bay. Hip Hip hip ...

I need to get me a census number because the silly buggers have me locked out. Nobody knocked upon my door bearibg registration numbers.

So, we come to the 9th and for mine, most perplexing verse of Yeat'S 'Prayer for my daughter'. He sounds like a whistled, old curmudgeon. Without further, Yeats Verse 8:

An intellectual hatred is the worst, So let her think opinions are accursed, Have I not seen the loveliest woman born Out of the mouth of Plenty's HOrn, Because of her opinionated mind Barter that horn and every good By quiet natures understood For an old fellow full of angry wind?

For what it's worth, that is a load of misogynistic claptrap. But ... what would I know.

Day 7 (Monday) - Zing, zing, zing went my heartstrings

What a day it turned out to be! I had no idea what to expect. When I left MUH on Sunday afternoon to return to Double Bay to play with Ally, Kirsten was not well. She was hooked up to a blood transfusion, she was hacking through her throat hole. But, she was on the up, no matter. Just that I have no experiences of transfusions. Yes, she was drinking from the syringe. Yes, I had heard a few words. But but but ... motherhood saps rational thought.

Just before 8am I hoofed it over to Edgecliff to train down to Hurstville to help my step-mother apply to Legacy to become my father's 'war widow'. Did I tell you that Dad died on Monday 9th May and 3 hours later (3 hours!!) Kirsten was informed of the tumour! I digress. On Monday, at least the trains were working; they had been out all weekend on the North Shore line, and I did not have the patience or the headspace for busing it. I must remember to give all the taxi receipts to someone who can make 'use' of them! As I hoofed it, Kirsten sms'd that she'd had brekkie through a straw. Bugger me!

Then half way through the Legacy man's interminable form-filling-out session, a call came into my phone from guess-who? My heart was in my mouth to hear her voice on the line. And her voice it was. Yes a little like through a megaphone, but still her sound, with her vocal mannerisms. AND ... she said that Darren was taking Ally over after her morning sleep. Well, this made the Legacy man go even s-l-o-w-e-r!

Whoosh! Onto the train at Hurstville and 30 minutes later into Town Hall where I found an interminable wait of 25 minutes for the next train to Macquarie Uni. All up, I left Hurstville at 11:33 and into MQU just after 1pm. I cocked my head around the ward door, to have a 'talktothehand' come up, for Kirsten to swing her legs off the bed, between the shafts of her walker, and hop over to me. I regard myself as a tough old biddie, but that was too much. The flood-gates opened for only the second time! In relief and love though, not pain and loss.

She knew they (THEY) would be here any moment, and that she would hear HER before she saw her. Kirsten shaped to jump up and run over to them, and Darren was beside himself. I was concerned that Kirsten would feel emotionally scarred (not scared) if Ally rebuffed her. But K had thought it through. Really? Fancy her doing that!

Ally cried and made like a mountain goat on Darren. He sat down on the window seat. And she took a few peeks. Darren left them on the seat, and sat opposite. Gradually, minute by minute Kirsten brought her around. Sans cuddles. Sans intimacy. But much bonding. She called her 'Alannah-bear', she said familiar phrases, and tapped her on the nose. High-fived her. At one stage, a little smile played around Ally's mouth. Pretty much fronm there on out, Ally became a mad thing, charging around the patient time-out room. Much noise, much pumpling of little legs, and flapping of little arms. Much chorkling, as her mad-as father made like a tiger in the jungle.

Then a return to the room for Kirsten who was totally zonked. In between all this emotionality (huh?), the dressing on her throat was changed, and there was a lengthy conversation with an overwhelmed speechie. The progress was manifest. Absolutely manifest. And, the respect from the speechie could be cut with a knife. I like that. I like it when, confronted by intelligence and enquiry, some medicos are able to rise to the occasion and treat patients as sentient beings. Especially my daughter!

But still ... it scared the shit out of me when Kirsten emailed at 5:30 yesterday to say that, in all likelihood, Thursday (Day 11) would be discharge day. But but but ... I spluttered ... but what if this ... what if that ... what if another ... Phut! Mere triffles. Details to be sorted. Get a grip, Mother.

So, what does Mr Yeats have for us today? Hah! Just realised that "A Prayer for my Daughter' only has 10 verses. Remembering that I only started posting on Day 2, maybe I knew something! WHATever ... here be Verse 7:

My mind, because the minds that I have loved, The sort of beauty that I have approved, Prosper but little, has dried up of late, Yet knows that to be choked with hate May well be of all evil chances chief. If there's no hatred in a mind Assault and battery of the wind Can never tear the linnet from the leaf.

Note: A Linnet is a small member of the Finch family. It eats flax seed from which Linen is made. The Linnet's song is pleasing to the ear and contains fast trills and twitters.

Day 6 (Sunday) - Here we go, swingin' low

Once again, a logistically complex day, made moreso by the first blood transfusion which commenced at about 2pm. The second transfusion is occuring as I write this post, which surprises me, as I thought they did not embark upon transfusions during nights.

I visited Kirsten from midday until 230. Tony and Pam then visited whilst I shot back to care for Alannah whilst Darren visited. She was pretty tired by then, but here's hoping she will get some sleep during this night. Last night she reckoned she had little more than about 2.5 hours worth.

As I walked in just on midday, she was having one of the hacking coughs that Darren described this afternoon, but squeezed out a grin for me. The trachy had just been removed and now ALL the saliva was streaming down her throat. Kirsten noted that we produce, and swallow about 1 litre of saliva a day, and that as we swallow it we use our throat, tongue and lips to control its passage. This is what she has to retrain: the controlled swallowing of saliva. I think, but I stand to be corrected, that there were a couple of stitches at the base of her tongue. At this early stage, the trachy hole has not closed over obviously, making the process just that much harder.

However, Kirsten is a good one for practice if she knows the usefulness of it. Beside her was some Bicarb of Soda to rise her mouth with (and then spit), plus some weak tea to drink. She is still hooked up to the 'restaurant'. After watching just a few mouthfuls of tea go down, the swallowing effort was already greatly diminished. The liquid was inserted into her mouth by the smallest syringe you have ever seen: 1 ml. When lunch (ordered by the speech therapist) arrived it also required the use of the same syringe. Kirsten started with the apple juice, with warm broth as the main. She had quite a few squirts of each of these, before declaring it onerous and tiring. But progress was made.

Prior to lunch, a doctor from the ICU (who drew the short straw) came around to obtain Kirsten's consent for a blood transfusion. He had to explain the risks to her, she had to explain her phobia to him, and then we discussed the progress in the Hb rate over the last few days, and maybe that trajectory would be maintained. I think on Wed Kirsten had been 67, on Thursday 77, on Saturday 85. However, both Dr P and Dr L had agreed that neither the 95 nor the 100 would be achieved by natural processes. Eventually, Kirsten cut all this short by saying she would do it. He gave her the consent form, and I told him to hang about because she would read every word. He swung to me with a bit of a gaping mouth: 'Why? Is she a lawyer?'

We had agreed with the nurse that it would be called the 'afternoon process' and that the bag of blood would be covered. They would cross identify the patient and the bag of blood, confirm Kirsten's blood type to her. And nothing more. In the meantime, Kirsten had asked me to continue on with the reading of "Pastures of the Blue Crane'. We got up to Chapter 8, BTW.

She kept her eyes shut and concentrated on my droning voice for about 30 minutes until Tony and Pam arrived. Tony then had to continue on with the reading. Not sure how long he kept this up: but he sms'd me later to say that she was in good spirits but that his 'read aloud' skills had deteriorated over the last twenty years! Hopefully, this first process made the second process easier for her to endure. Each bag of blood to be transfused was about 300 ml.

I nipped back to Double Bay to look after Ally and to enable Darren to drive out to spend some time with Kirsten. She was incredibly tired by this time, and Darren was back in Double Bay just before 5pm.

A looming issue is the reunion of mother and daughter. There is a difference now in Alannah's behaviour. She is not eating as well (or with good manners) and she is not settling to sleep as well. She is clinging to Darren when he has to go, and then clinging to me when I have to go. I will cut back my visits and their duration once Kirsten is fit and well again, but this might not be immediately she returns home. I need Ally to stop clinging to me, and to refocus upon her mother. Yet, I must not abandon her either. Must handle this all with the utmost sensitivity.

I have included this third image because there was a 13 page screed about the importance of the thoat, swallowing and speaking. Kirsten spoke a number of times this afternoon. She had to state her full name and date of birth to verify the packet of blood, for starters. But she spoke on a number of occasions during my time with her today. It is a visible effort, and the sound seems to me as though it is coming out of the trachy 'hole'. Perhaps that will close over during tomorrow. Her voice occasionally sounded like Kirsten, but was very breathy. But knowing her, she will have worked on this by the time I see her tomorrow.

Tomorrow, I have to be at Legacy House in Hurstville by 9:45am to meet my stepmother, Peggy, and fill in all the forms to enable her to become a 'war widow' with the extra benefits that implies (her own gold card, and about an extra $200 per fortnight). I have read the rules and their definitions and don't think Peggy will have any trouble qualifying. At the same time, my father's will is progressing towards Probate, so all that will soon be complete. After doing this chore, I will train up to Maquarie University Hospital and keep Kirsten company for the first half of the afternoon, before going over to DB to enable Darren to go out to the hospital, too.

No need to explain the images for this post, so straight on to our Yeats' verse for the day, Verse 6:

May she become a flourishing hidden tree That all her thoughts may like the linnet be, And have no business but dispensing round Their magnaminities of sound, Nor but in merriment begin a chase, Nor but in merriment a quarrel. O may she live like some green laurel Rooted in one dear perpetual place.

Day 4 (Friday) - Ramping it up a notch or three

After yesterday's trough, I think we worked hard at being more 'up' today. We are working as a team fairly well at this stage,. There are generational differences. Or more likely, it is just the way I go about things compared with the way K&D approach issues. They are continually on top of things, asking questions, following up issues, demanding value for money, that people offer a good service, and perform a good job. I am not so much laid back, but it would be more accurately described as being hesitant. Yes, I may be outspoken, but I am not personally demanding. I guess this little outburst relates to whether Kirsten will get as good care in the ward as she has in the ICU. I will make it my business over the weekend to meet the ward manager each day. I met her today, but forget her name. I would recognise her again, though.

Enough of that. How was Kirsten today? The swelling from the forehead has gone down. The left eye is now surrounded (enveloped) in puffy bruising. The entire left of her head is a bit blocky. Her lips are very swollen, but none moreso than the day before. she smiled a couple of times today. Firstly, at the lovely card that Day-Care sent along to her that Alannah had 'made'. She grimaced when the nurses were surprised that the photo on the cupboard was of Kirsten. Yep, you would not recognise her unless you knew her.

Her right eye was open a lot today - open and focussed and following. Her writing was not as well formed but she might have been lower in the bed, I think. Her gesticulating is very clear. The drooling irritates her, which is not surprising. We all assist her, but she is also now empowered to 'irriate' her own mouth. Using a suction pipe stashed under her pillow, she sucks out the drool and flushes the wiring. I gather that on Monday they are going to release the trache a bit and allow some saliva down the back of her throat.

The half hard caste went on the back of her left leg today, and the bandaging was unwound partly for the physiotherapist to check her ankle and the condition of ... what is that bone called ... ankle bone ... the puffiness and the yellow is in retreat.

Over the weekend, the urine catheter might be removed and they will use a comode. The two physios on duty over the weekend, will introduce Kirsten to a high and a low walker and she will be taught how to 'hop'. The leg is not to bear any weight for a while.

So a big day. Always is when you go from a chrysalis to a butterfly. A couple of weeks ago I told Kirsten the story of when I had my heart operation at St Vincents in Melbourne in 1972. The day after I was released I insisted that Tony (Kirsten's father) return me to hospital because my chest wall was going to spring open and my heart flop on the lino. The hospital was very good. They showed me to the bed that I had occupied and allowed me to lie on it. After two hours I asked if I could go home.

And, by the way, Kirsten and I had chatted for half an hour, when she wrote on her pad 'Chapter 2'? We read Chapter 2 and were half-way through Chapter 3 when Tony arrived.

Tomorrow, I am going to care for Alannah from 7:45 'til close to 5pm to allow Darren to visit Kirsten and then play soccer. It has been a long, tough week. But we are making progress. Kirsten is making progress.The enforced solitude is very hard to take. Kirsten used a word for it today, but my brain is a bit of a sieve. The days are long and boring. She is not able to read yet, nor focus on the television. As you may know, she has a 'cockpit' of TV and internet beside her bed from when she is ready. I suspect you might hear directly from her over the weekend.

Image 1: Taken today. Her hands look very close to normal.
Image 2: Taken Wednesday down in ICU.
Image 3: The view from her Ward bed.

"A Prayer for my Daughter', Verse 4: Helen being chosen found life flat and dull And later had much trouble from a fool, While that great Queen, that rose out of the spray, Being fatherless could have her way Yet choose a bandy-legged smith for man. It's certain that fine women eat A crazy salad with their meat Whereby the Horn of Plenty is undone.

Hah, not sure what to make of that verse. For Yeats, I think it had much to do with Helen of Troy and Zeus. I'd love to know more about the 'bandy legged smith' especially if it might refer to WBY himself. I really like the concept of eating crazy salad with one's meat!

Day 3 (Thursday) - Doing the side-step shuffle

I guess it had to happen that I would feel down eventually. Not depressed, as such. But I know this is just playing with language. Just that at the moment, I live every moment. I am aware of the passage of every minute. Usually, when I stuff things into my life, time simply whizzes by. At the moment, I am rushing somewhere all the time. I have to write it down each morning, to ensure I meet the times and the commitments I make. But still time drags. It's okay. By the morning I will have kicked byself up the arse, and given myself a lecture that this is not about me. I want her better. I want it fixed. But to achieve this, what she requires is TIME. Give her time. See, the arse-kicking is underway already.


Today, I spent time with Kirsten immediately AFTER they had moved her to the chair. And she had no energy left. She communicated very little, and mostly her eyes were shut. Her heart rate hovered around the 70 mark, which is Darren's ball park for nearly asleep. I guess this is the best scenario for healing. She knows we are there, and yet she is also 'sleeping'. I showed her the book, and asked her if she would like me to read it to her. I think I said I did not mind if she slept. Which I didn't. When I showed her the book, I got some body language that meant, to me, 'get on with it'. So I did.

I read her the first chapter of "Pastures of the Blue Crane' where Ryl meets her grandfather, Dusty, and learn they have inherited the old Masterton place up at Bundoora. Tomorrow (Friday) I will visit from 3pm for maybe 60 - 90 minutes. If she is up to it, I will try to read Chapters 2 and 3. This is a story Kirsten knows backwards.


Today Kirsten's face was the worst I have seen it. But (kick, kick) I knew the swelling and the bruising would come out with time. I knew that. I knew that her left eye would shut. That her left socket would appear to sink back, but only in comparison with the swollen tissue around it. I did not realise that the skin on her forehead would swell.

Her lips are swollen and dry and require pawpaw ointment. But her hands and fingers look good. They are good colour (she is fair-skinned). They are not bloated. They are not parched. When I see her tomorrow, some of the tubing should be gone. Maybe the three drains in the neck. Maybe the drain in the leg.

I will go for a long walk early tomorrow morning, and gee myself up. Promise.

Where did I get up to with WBY? Ahha, my favourite - Verse 3:

May she be granted beauty and yet not Beauty to make a stranger's eye distraught, Or hers before a looking-glass, for such, Being made beautiful overmuch, Consider beauty a sufficient end, Lose natural kindness and maybe The heart-revealing intimacy That chooses right, and never find a friend.

Day 1 (Tuesday) - On books, covers, and judging

We are less what we appear to be on the outside, and more what we make ourselves to be on the inside. These shots were taken from Kirsten's perspective. Her physical perspective. I know you would love to see her; to see what she looks like. I think it normal human curiosity. However, think of it as learning about someone over the internet, through blogging. We don't necessarily know what people look like, and often we realise that we have no need to know the cover, because we have come to value the book. So photos will come later. Probably, once Kirsten is out of ICU.

I was astounded by her condition/progress yesterday. She is conscious, alert even. She is weary, and drugged to the hilt. But, hey! Her legs work, her arms work, her brain works. Her sardonic attitude is intact. And we were Day 2. I am in touch with other people (nearly wrote patients, but would not want you to think Kirsten only patient, so neither are these others). I realise there are hurdles. Good days; shite days.

I was without courage, and had to ask to go along with Kirsten's father for support. And maybe that helped her, too. As I stroked her forehead, human brains being wierd, I flashed back to that Monday morning at Royal North Shore just over 32 years ago. A 4 hour old girl lay in the 'cot' across the room, I rang the buzzer, and asked the nurse what to do next. Aren't I supposed to feed her, or something. How do I do that?

I had always thought that Kirsten communicated a lot with one eyebrow, that cocks, and one corner of her mouth, that kinks. It wasn't until yesterday that I realised that these were simply outward manifestations. No no, I am not going all religious on you. But, she actually communicates via her eyes, the doorway to the soul. The eyes cocked and kinked yesterday.

She said at one stage that she had overheard a conversation between the nurses, and that her BP was low. They hadn't said it was low, they had simply vocalised the numbers. That machine is on Kirsten's right and that side is a bit fuzzy; and, anyway it is just slightly behind her. So we asked Nurse M who told us chapter and verse, I won't go into details, that is covered on 'Marsupial Mum". This is an opinion piece. I'm not a journalist, I'm a broadcaster.

I will nip over to MUH again in half an hour, then back to Double Bay to play with AJ whilst Darren nips over. I want to read to Kirsten from 'Pastures of the Blue Crane' by Hesba Brinsmead, but it is on her shelf at DB. So, tomorrow for that one. Kirsten's nom-de-plume is 'blue crane' which you can see on her Flikr account of photos via the images of AJ at the bottom of Marsupial Mum. The copy is very tatty and worn. I bet there is a date inside the cover; it was important to her teenage-self. For mine, however, let me close with the first verse of Yeats' 'A Prayer for my Daughter'. I have always treasured verse three: it speaks directly to the title of this post. However, come on this Yeatsian journey with me beginning at the very beginning:

Once more the storm is howling, and half hid Under this cradle-hood and coverlid My child sleeps on. There is no obstacle But Gregory's wood and one bare hill Whereby the haystack - and roof-levelling wind, Bred on the Atlantic, can be stayed; And for an hour I have walked and prayed Because of the great gloom that is in my mind.