The brain drain came out on Thursday and Amanda has now been 4 days on the main neuro ward.
I met with her medical team this morning ( well, they are lots of people’s ‘team’). This week’s plan is to remove the tracheotomy tube and start physio.
By 11.30a.m. they had let down the balloon which blocks her airway and allows the trache tube to work, so she could breathe freely. This was a 2 hr initial test. At 5.30p.m. she was still going strong. If she manages 24 hrs straight, it’s coming out!
She managed 15 minutes of sitting up and also managed to comb her own hair. The physio said she would be asleep for the rest of the afternoon after that.

Back from a literal 24 hr flying visit home organise a house sitter, see both our work colleagues and do some domestic admin stuff.

As I walked into my work on Thursday morning the ICU nurse phoned to say Amanda would have the brain drain removed shortly and also be taken up to the general medical ward.

My sister in law was in Wellington for work, called in to visit Amanda and ended up holding her hand while they carefully tugged the thin tube from deep in her brain, no anesthetic, no sedative. That’s some serious sister in law bonding!

They called me again at three as I was on the way to the airport to say she’d had a shower and was on her way up to the  neuro ward.
So when I arrived just after 5p.m. she was lying comfortably fresh and clean, a slight gash on her head and looked very relaxed.

Despite a busy day she stayed awake and alert the whole time we were there and she practiced clenching her first and wiggling her fingers. The only machine she is connected to is the one drip feeding high fibre sludge through her nose as the diabetic nurse had already visited and modified her diet to sort her blood sugar out, driven haywire by the high energy nosefeed.

Today, (Friday), the nurse visited who will start weaning her off the tracheotomy from Monday. We also noted she moved her right arm a few times and wriggled her right toes when the nurse tested her reflexes. She also nodded in response to a question.

Amanda had a very brief session today with the physio who has been to see and assess her pretty much every day so far. He assessed her grip strength and the ability to move her left leg at the ankle and knee. He also noted her pupils look to the left. This is because her brain has ‘forgotten’ she has a right side so we need to encourage her to follow with her eyes as we move a hand across from her left, right across to her right side.

She had the arterial line in her wrist and the blood pressure monitor removed today and so now just has the line in giving her insulin as the line in her nose feeding her is mucking up her blood sugars (common occurrence). The heart monitor also remains in place for now.

She was pushing her glasses up her nose as she sat in the chair for the afternoon, and was clearly mouthing ‘yes’ and ‘OK’ to me, as the trachie tube is still preventing speech. They also moved the bag collecting the fluid draining from her brain higher to test the pressure. The pressure was very low which means it will be safe to remove the drain, probably tomorrow. Once that’s gone the physio can work on getting her on her feet for the first time in 2 weeks to check which way she falls so they can start work on some serious rehab.

Lots of small steps, each one leaving her too tired to attempt the next for at least 15 minutes. But it’s a start!

A week after her massive brain bleed Amanda continues to make small steps each day.

This is day 8 of having the breathing tube which the intensive care paramedic inserted on our kitchen floor. As a normal consequence she is at serious risk of acquiring  VAP – Ventilator Aquired Pneaumonia. As a precaution she is being given antibiotics and gentle physio.

Her medical team were very keen to remove the tube which is the ultimate source of any potential infection. So this afternoon they performed a tracheostomy. This sounds scarey but nowadays is a thin needle over which they slip ever- larger cuffs until the hole is big enough for the tube. This tube is then briefly reconnected to the ventilator which gives her extra oxygen as they gradually wean her off and onto self-regulated breathing ( which she is already doing). This in NOT permanent and eventually they will remove the tube and the hole self heals.

Now this has been procedure has been done,they can also start gentle physio on her limbs to get the muscles moving again. Bear in mind apart from everything else the pneumonia and the resultant fever would have her feeling like crap!

As soon as they switched off the sedative post- procedure she opened her eyes. With no tubes and wires in and around her mouth she looks so much more human. It also means I can read her facial expressions far easier and finally give her a proper kiss on the cheek!

So today started with fever and ice packs and cold flannels and ended with a lower temperature, no more ventilator tube down the throat and a cooler temperature with spontaneously opening eyes.

As soon as she can prove she can stay awake for sustained periods and sorts out her breathing (which shouldn’t take long) they will be happy for her to go up to the general ward, under ICU supervision.

It’s all down to her now.

Amanda is now able to open her eyes on command for very short periods, and she is ‘tracking’ which means her pupils can follow movement, but only to the ‘midline’, so from her far left to the point right in front of her nose. With a left-side brain bleed it’s likely she has no awareness of the right side of her body at this stage and so acknowledges nothing to the right of an imaginary line running down the centre of her body, from the top of her head to her toes.

She has very limited use of her left hand and can softly gently grip on command. She has been using it to investigate the various wires, lines and the breathing tube, which the doctors are keen to take out, but only once she is more awake than asleep.

Her heart rate is good and a chest xray yesterday was clear. She also had a second MRI scan but her neurosurgeon is frustrated that the image is still too blurred by the remaing blood in her brain to be able to see what caused the bleed, and he is keen to find out.

 Amanda remains in the ICU in Wellington Hospital after a massive brain bleed last Wednesday. The drain will remain in her head for a number of weeks until the fluid changes from blood red to a lighter cerebral fluid straw colour.

On the scale used for levels of consciousness which is 3 to 15 (15 being fully awake and alert like you are now), she is around a 7 at the moment. She is sleeping most of the time but I’ve learnt that when the heart monitor shows her heart is above 60bpm she is awake enough to hear me. She can squeeze my hand on command and has been fiddling with my wedding ring, and I know she is trying to communicate and let me know she is still in there somewhere

Yesterday she was unable to open her eyes but the day before she could. Apparently this is normal in the slow recovery process. I remembered telling the paramedics she was wearing contact lenses as they worked on her 5 days ago. I presumed the message would be passed on, or it was part of some kind of checklist once she reached the hospital in Wellington. However, yesterday as the nurse carried out the regular care procedure and gently opened her eyes to put drops in, I caught a glimpse of the edge of a lens. The nurse checked and confirmed she still had the daily -wear contact lenses in she had put in 5 days earlier. Removing them while wearing surgical gloves proved useless so she called over another nurse who wears contacts and knew how to remove them quicly and safely. Presumably only the regular administering of eye drops had stopped them from sticking to her pupils days ago.

Overnight she was trying to pull out her breathing tube and her blood pressure went up so she was sedated. They took her off that 4 hrs ago so she will probably still be drowsy all day today as a result.

She is receiving amazing care and is probably in the best place in the country, given what has happened. Around her other patients are also being admitted to ICU. Some are just post -op so recover, are assessed and move on. Others, like Amanda are critical and stay longer.  The most critical are quietly moved into curtained, private rooms and the strict rule around only 2 visitors per bed is relaxed to allow loved ones to say a final goodbye.

I phoned the kids (20 & 25) who both live in Wellington, told them what had happened and asked them to meet their mum at the hospital. They got there before her.

I went home and tried to book the 7a.m flight the  next morning.  Thanks to a Guns ‘n’ Roses concert in the capital the following day all flights to Wellington were booked until 6pm. The only option was a 9a.m. seat from Blenheim, a 90 minute drive away.

I spent the next few hours emailing and phoning family in New Zealand and the UK, packing a bag with essentials for both of us, and checking the house could be left for the foreseeable future. I got to bed after midnight and got up again by 5a.m. I may have even slept.

The drive to Blenheim was a blur of tears and unneccesary speed and I was at the hospital by 9.45a.m. just under 12 hours after she was admitted.

During the night they had put a drain into her head and stabilised her. She was being assisted to breath and had no right side feeling. She was barely able to open her eyes and could faintly squeeze my hand to acknowledge my presence and that confirmed to me she could hear what was going on.

The kids were both still at the hospital and  my brother had flown down from Auckland to support us.

Our son is doing a postgraduate psychology doctorate. “You’re looking at this from a slightly different viewpoint to the rest of us aren’t you?” I asked him.

“I do have a slightly morbid curiosity.” he confessed. But at least he was able to talk on more equal terms with the neurosurgeon when it came to discussing and interpreting the MRI scan.

That afternoon we had a meeting with the neurosurgeon, a curiously comforting hybrid of Boris Johnson and David Attenborough.  He said she was lucky to be alive. Having suffered a ‘massive brain bleed’ (his exact words) the next few days would be critical and he gave no promises or assurances for her prognosis.

She was likely to remain in ICU for many weeks until  they were happy there was no longer any blood remaining and they could safely remove the drain, Thankfully there was no longer any pressure on her brain. They wanted to get her breathing unaided but this meant being able to sit her up which was impossible in her current semi-conscious state. the longer the breathing tube remained, the greater the risk of inducing pneumonia.

I was assured she was not in pain, which given the prodigious quantities  of strong drugs she was on, was not surprising. A dedicated (in more than one sense) nurse stood at the foot of her bed constantly, checking vital signs every 15 minutes, fiddling and calibrating equipment and making notes. I found myself watching every breath and heartbeat on the monitor, reacting each time she somehow made the numbers change or made the trace pitch and dive unexpectedly.

As she lay there thought how happy I was that I had known this woman since we were both around 9 years old. We had gone through school together, grown up together and now we were going through the toughest challenge we had ever been given together. No one knew her better then me. I was thankful I could read the merest eyebrow twitch, because at the moment it was the only way she could let me know she was still in there somewhere, fighting to get out. When the doctors came around and tried to get a response by squeezing her hand and failed, I could tell them I had got one 20 minutes earlier. She wouldn’t have the stamina for another one for at least an hour after that.

Monday, 30th January 2017 was a Public Holiday in New Zealand.

We had finished painting the inside of the window frames at the front of the house. The paint had dried and we were re-hanging the curtains. As Amanda reached up to fix a hook onto the track she winced.

“Ow, I’ve just pulled a muscle in my neck.” it was painful enough to force her to take a painkiller and sit down.

For the next 48 hours the pain persisted.

Two days later I was at the gym after work and decided to finish my routine early, go home and prepare dinner.

I was in the garden picking salad leaves when I heard the car come down the drive on the other side of the house. A few momemts later Amanda called out. Not her usual  “I’m home.” This was more urgent –  and she was calling my name. I walked into the kitchen to find her sat at the dining table looking frightened.

“I can’t feel my right side, I think I’m having a stroke.”

The headache had got progessively worse during the day and even stronger painkillers were having no effect. I called 111 and explained the symptoms, wondering for a moment if the operator actually believed me as many of the signs were apparently not yet there. She could speak coherently and there was no obvious face drooping. She also felt very thirsty.

I was surprised when the paramedics came through the kitchen door less than 4 minutes later. They got the call on their way back from another ‘shout’ and were already on the highway a short distance away.  One began asking me for details, typing into an Ipad, while the other assessed the patient. She could move her limbs and answer simple questions albeit slowly. But he sensed something was not right. He asked her to stand and walk towards him. As she did so, she lunged for the sink, violently vomited and slumped into his arms, before vomiting again. The paramedic gently lowered her to the floor as she snorted and gasped for breath. Both of them worked as I paced the kitchen floor, the realisation of what was happening, as this sudden, instant, catastropic collapse swept over me  I casually switched off the oven, took out the dinner and threw it away.

 They called for back up and an intensive care paramedic who happened to live in the next village, arrived within 5 minutes.

He quickly confirmed the brain bleed and decided she should be flown to Wellington for immediate treatment at their specialist neurological unit. For the next 30 minutes, three paramedics worked on our kitchen floor, stabilising her, inserting a breathing tube and administering powerful  drugs to induce a deep coma to rest her damaged brain.

The IC Paramedic decided the patient needed to be airlifted straight to Wellington hospital, a 30 minute flight away, across the Cook Strait, at the bottom of the North Island. As the ambulance made its way to Nelson Airport, a 20 minute drive away, it pulled over to collect a fourth paramedic.

On arrival at the airpoint the pilot said due to weather conditions the rescue chopper was unable to land on the roof of the hospital and so the only option was the fixed – wing air ambulance. This had just been refuelled and with the weight of the pilot, co pilot, 2 paramedics, the patient on a heavy stretcher and full tank of fuel, there was no room for me.

By now it was 8.30pm. The last commercial flight had left, and I watched, still in my gym gear, as on a perfect warm summer evening, the small plane took off and headed into the still-bright, summer – blue sky…and into darkness