Reinventing Emma (8 page)

What do you say to the people you love when you may never see them again?
I stumble over my words and end up saying, “So what are you guys going to do now?” I plug my tears, fixing my eyes on the pastel framed portrait on the far wall.

Bec lets goes of my finger, exchanging it for Mum's hand. I squeeze tightly onto a lifeless toy bear who's accompanying me to theatre.

“See you Ma,” I blubber, turning my head to get a kiss on the cheek. A kiss that I'd once wiped off – embarrassed.

“You'll be fine, Em,” Mum tries to reassure me, but her shaky soft voice is a dead giveaway that what happens now is totally out of her control.

At 10.35 a bubbly nurse enters suddenly with a clipboard.

“You all ready Emma?” she asks casually. I gulp the tears down and nod hesitantly.

A wheelie stretcher soon emerges, pushed by two males wearing scrubs and shower caps that match mine. They ask me a checklist of questions like, “Do you know what procedure you're having today?”, “What part of your body are we operating on?” and “What's your birthdate?” They cross-reference with the details on my wrist band. Convinced this is me, they instruct me to lie down.

The cot sides slide upwards. The bed is turned and I'm wheeled away. I see my sisters huddled at Mum's side. My dad comes with me to hold my hand while they put me to sleep. I feel like a wuss but don't care.

Once inside the cold theatre all I see is faces in blue shower caps and facemasks. I smell disinfectant. Beeping sounds surround me. I taste tears, salty tears. I clench Dad's fist hard and the last thing I feel is a cold sharp sensation creeping up my arm.

Chapter 13

Things Don't Go According to Plan

My diary writing ceased there. The next part of my journey is put together with excerpts from my mum's diary, Dad's regular ‘Emma Updates' and the recollections of my sister Bec and my friend Kiri.

Medical letter

Excerpt from Professor Michael Morgan's letter dated 27th June 2005 to Melbourne neurosurgeon Mr John McMahon

Thank you for referring Miss Gee. As you know Emma was diagnosed with a right pontine arteriovenous malformation. She was admitted to Dalcross Hospital for definitive management of this lesion.

On 17 June 2005, under general anaesthesia and with the aid of frameless stereotaxy, she underwent a retrosigmoid craniotomy, mastoidectomy and partial temporal free bone flap craniotomy. The transverse and sigmoid sinuses were able to be isolated and, immediately in front of the vein of Labbe, the transverse sinus was ligated and divided with the dural opening both above and below the tentorium extending across to the free edge of the tentorium. This enabled further retraction forward of the sigmoid sinus, after the mastoidectomy, to facilitate an approach to the arteriovenous malformation. The AVM could be identified on the pial surface of the pons with clear evidence of surrounding haematoma. The arteriovenous malformation was resected on its margin and it was disappointing to see that the margin was not as well demarcated as many are in the brainstem. The AVM resection was complete and Emma went to Intensive Care.

Bec remembers …

And then there was the waiting. Tick. Tick. Tick. Coffee. Tick. Tick. Tick. Banana bread. Tick. Tick. Tick. Talk to Mum or Kate about something. Tick. Tick. Tick. Sneeze. Tick. Tick. Tick. Look out the window. Yes, there was the waiting. Oh, and Dad's mobile phone. It sat in his hands like some crystal ball that was to throw some news, some future, some ‘what would be' at us. It told us nothing so we went back to the hospital and played some more of the waiting game.

Mum's diary: 17th june 2005

At 4.30pm Professor Morgan came out to tell us all had gone well and that he thought the AVM was all removed. It was more difficult and deeper than he had thought. It's hard to believe you could work on something just 10mm in diameter for 7 hours – what an amazing, skilled man!

Bec remembers …

All had gone well. She would wake up soon enough. Be OK. I blinked. Unblocked my ears. I needed to hear it again. Yes, she would be OK. Was it that easy? I wasn't prepared for this. It being so easy.

Kiri remembers …

I'd stayed at a friend's house the night of Em's surgery, and I woke to the ‘Message received' beep from my mobile. Wide awake at once, I grinned and breathed a sigh of relief to hear from Bec that Em was out of surgery – she was OK. I woke up my friend to tell her the good news, then slipped back into a weekend doze.

Mum's diary 17th june 2005

Em was slow to wake up so we decided to go back to my sister's place at Pymble for dinner … We were all so relieved and happy to know the operation had gone well, but then suddenly Bec became terribly upset and said she had a dreadful feeling that things were not right for Emma. Five minutes later the phone rang. Professor Morgan, the surgeon. Em was not waking up and they were doing a CAT scan to ascertain why. Possibly she was bleeding!

Bec remembers …

Dad turned white and told us that the professor had said there'd been a complication and Em was bleeding internally – that they had to go back in and operate again. I collapsed. Hollow. Gutted. Cried like I'd never cried. Dad left to sign some forms. I don't know where everyone else was. I know my aunt's lounge room was packed full of bodies. Aunts. Uncles. Cousins. I remember looking up and noticing how desperate it was. Nobody need say anything. Our bodies sang desperation. A sea of distraught people. We were all connected. Hugging, linked, not wanting to let each other go. Em gone was enough.

Medical letter

Excerpt from Professor Morgan's letter dated 27th June 2005

She was slow to wake up and appeared to have a left upper limb weakness so went for a CT scan immediately. This showed a haemorrhage extending from the bed of the AVM around the pons laterally toward the IVth ventricle. Because of the concern there may be residual AVM she was immediately returned to the operating room. There was no active bleeding but there were some small blood vessels that were difficult to distinguish between them being a small amount of residual AVM and enlarged feeding arteries, but this was likely to be the source of the haemorrhage. This was secured with micro clips and resected along with evacuation of some of the haematoma before she again was returned to the Intensive Care unit.

Em in a coma in Intensive Care, (Dalcross Hospital, NSW 2005).

Mum's diary 17th june 2005

My brother Peter prayed with us as we sat around the lounge room stunned and waiting for news of the operation to stop the bleed found by the scan. The second operation was 9pm to 11pm, so we were so relieved when Prof Morgan rang to say that he had removed the remaining piece of AVM and sucked out the blood that had pooled in the cavity.

Kiri remembers…

It was a rude shock to receive a call a couple of hours later from the designated breaker-of-bad-news (Clare or Al? I can't remember …) who was calling to say that Bec had, in her excitement, spoken too soon. Although Em's procedure had been completed, there had been some complications, a bleed, and she was now to remain in an induced coma to maximise her chances of recovery. My stomach dropped.

Mum's diary 18th june 2005

We went to see Emma in ICU – tubes coming out of her everywhere – so unbearable for any mum to see her child lying there so helpless and vulnerable. The stress is unbelievable but she is alive! A tense, tense night ahead.

Medical letter

Excerpt from Professor Morgan's letter to Mr John McMahon dated 27th June 2005

Following this Emma is, not surprisingly, slow to wake up and she continues to have much of the findings she had prior to, and immediately after, the first surgery. Angiography at this time demonstrated complete resection of the arteriovenous malformation and I am hopeful her recovery will be continuous and productive.

Bec remembers …

From there on it's really a blur. One day was the same as the next. Wake up. Em awake? No. Try to eat. Go to hospital. Watch her, or somebody that lay in her bed that looked nothing like the Em I knew, try to breathe – live – breathe. Again, I was pretty good at not connecting. Being there without believing it was really how it would be. I had to believe she would be OK. I held her hand and told her to fight. Hang in there. I seriously imagined my energy channelling into her tiny frame, giving her a bit of a zap. God knows, I think at some point, on one of those days that felt like one long day, I even sang to her. No wonder she slept. I remember taking people in to see her. Uncles. Friends. Watching them cry. I had to be strong. Show them it would be OK.

Incredible support from the beginning. Bec with Emma, still in a coma (Dalcross Hospital, 2005).

I think the things I hated most were the machines. The beeping. Beep. Beep. Beeeeeeping. Was something wrong? Did I squeeze her hand too tight? Did I talk too loud? I hated the smell of it too. Hospitals have a musty medicated tang. A lingering air that just makes you feel trapped.

Dad's emma update 18th june 2005
(the first of many emails to keep friends and family informed)

Our apologies for not letting you know what's been happening before now but, as you'll see, the last day or two has been fairly stressful for us all.

Em had her op for removal of an AVM yesterday. After a seven-hour procedure, all seemed to be well and the surgeon was pretty happy with the way things had gone. Unfortunately, last night she had a small bleed into the operation site and had to be taken back to theatre. Last night and today her condition has been stable but is still very serious. She will remain in intensive care for a few days. She is still asleep so we haven't been able to talk to her yet and needs assisted breathing so that the staff can properly control her functions whilst her brain heals. The next 72 hours will be critical. The good news is that today's angiogram showed that all of her AVM had been removed.

Thank you for your support, love and prayers. Please don't ring us at the hospital. Text messages and emails are great.

Mum's diary 19th june 2005

Another night Em has come through but still she's not awake partly because of her brain swelling and the bleed into the cerebellum and partly due to the sedation to stop her blood pressure getting too high …We are all so tired with the tension and just hope we sleep tonight after lying there each night waiting for the phone to ring. Tomorrow is crunch day – 72 hours since surgery where the swelling maximises.

Dad's emma update 20th june 2005

Thank you again for all your prayers, messages and emails. We feel very loved and supported. Em remains in intensive care. She is still critically ill, but the good news is she is stable and not deteriorating. Hopefully in the next day or two they will be able to wake her up. The medical and nursing staff here are fantastic and we have every confidence in them.

Mum's diary 21st june 2005

Tonight Dr Chia and Prof Morgan assured us that Em is progressing and that she had briefly opened her eyes, Prof Morgan said he was 95% sure she would wake up and that he's seen people come from a worse place to achieve full recovery. That was so reassuring and then Em not only squeezed our hand, but opened her eyes for us briefly. This was so exciting but frustrating that they have had to sedate her to keep her blood pressure low as the vessels in her brain heal better. Surely tomorrow will see more improvement!

I found out much later what had actually happened in my operation. The edges of the AVM were rather poorly defined. At the base of the AVM in my pons (part of the brain stem) it was difficult for the surgeon to distinguish between the abnormal vessels of the lesion and the normal vessels in the brain tissue that fed the AVM. So, by the end of the first operation, he thought he'd completely removed all of the abnormal tissue. He was worried that if he dug any deeper into the pons he would do more harm than good. Unfortunately for me, a few abnormal vessels were left behind and bleeding from these was responsible for the damage to the pons and the nerve tracts to the adjacent cerebellum (which controls balance). At the second operation the blood clot was removed and bleeding vessels were clipped off. The good news was the postoperative angiogram confirmed that all the AVM had now been removed.

But the bad news was I had had a haemorrhagic stroke. At that point it was unclear what that would mean.