Nil by mouth (4/4)

If you are eating your breakfast whilst reading this instalment- you might want to put down your spoon for a paragraph or so. In the first couple of days after the last operation the wound continued to leak. Given the location (just above the right ear) the fluid in question was CSF(Cerebrospinal fluid). The surgeons added additional sutures (stitches) twice in the first two days after the operation. It seems to be preventing further leaking and Annie was able to go home. Once at home it continued to leak –often only perceptible to Annie. If nothing else it was an annoying in the same way a slightly running nose is. It was worse when she lay completely flat and made better by sitting up in a chair. The worry with something like this however slight is if something can get out then infection can also get in. After a week at home it was time for the district nurses to come and take the stitches out. The wound had healed well. There were no signs of infection and Annie was well. There was no sign of anything serious but they were concerned by Annie’s mention that the CSF was still leaking. So they stopped the procedure and we contacted the hospital. This is one of the moments when you want to have the surgeon on your mobile and have him pop over with a few of his team for a look. In reality his schedule means some days he is pretty much in theatre all day until late, in clinics or not available at all (no jokes about golf/private work please). It so happened this was Annie’s surgeon’s main elective surgery day.

It all started 3:30pm I was in an email exchange with Annie’s key nurse at the hospital. With the head person in theatre other doctors in the team were consulted. The following morning the key nurse advised not to touch the stitches and to await the surgeon’s advice. By 10:30 the view came through that Annie needed to go back into hospital to have it looked at and that Ambulance transport would be arranged.  At noon Annie’s GP and the Macmillan consultant visited for a scheduled visit. They offered assurance that it was a matter for the brain surgeon.  At 14:30 the hospital called to say that a bed was available on a neuro specialist ward was available for Annie but that no transport was available so we would have to bring her down ourselves or to take a taxi. There were two problems here – first we really didn’t like the tone that she was being re-admitted. It felt like a backwards step. And second the through of Annie travelling to hospital in a taxi in her condition and with the current pandemic seemed far too risky. Annie’s key nurse attempted to swing something for us to no-avail. There was no transport. Full stop.

For a moment I was tempted to phone 999. But they would have taken her to the nearest A&E. Instead we mobilised the taxi ramps. Using Annie’s mum as a stooge in our dress rehearsal -we practised loading and unloading Deborah in and out of our camper van. Once confident we knew what we were doing – we gently wheeled Annie into the back of the van and secured the chair down with straps and chocked the wheels (all camper van owners have some chocks to level out the van on uneven campsites, so they came in handy).  Annie’s brother, a hospital doctor, rode in the back and I drove down the half empty streets to the hospital. It took us about 20 minutes. It was a warm day but Annie felt cold so we kept the van pretty warm. Just as we were pulling into the carpark space Annie was sick. Thankfully we had stuff in the van to help her get cleaned up and we left Michael to clean up while we wheeled down in our masks into the deserted hospital. By now it was 16:30.

When we got to the ward = Annie had her own room. It was as hot and airless in the room as it had been in the van. My challenge was how long I could stay with her until I got chucked out (no visitors permitted rule). In the end I got about 90 minutes. Student nurses busily got Annie settled, doing blood pressure fetching her a tooth brush to freshen up, and filling in that whiteboard with -name, nurse and “what matters to you?” information. When they asked Annie the “what matters to you” question I thought she was going to say “getting the fuck out of here” but she instead said something more anodyne – like “keeping in contact with my family”. In the meantime the nurse in charge asked me lots of questions about Annie, her condition, how we travelled in, her earlier sickness. Through all this Annie had about 5 or 6 partial seizures. I told them it wasn’t unusual for her to have one or two and sometimes as many as this. But I soon found myself in a catch 22 situation.

 “Oh so the seizures are not well controlled?”

 “No, no they are, this is very unusually.”

“Oh – so this is unusual -this means she’ll need to stay in for observation”

“No no – this DOES happen sometimes, she’s being having these for quite some time”

“Oh- so they are not well controlled” –

“oh, erm. Please don’t admit her, We just want her home”.

Not only did I want to stick around to be an advocate through this process -I also wanted to be there when the doctors came. I wanted to be there when they examined her wound. I wanted to know what their plan was. The problem we had was the surgeons that were working would have to prioritise emergency cases above us. The nurses continued to page the doctors – but by 18:00 there was still no sign. The sister came to the door and gave me a glance to say – go home. I kissed Annie goodbye and just as I got to the door one of Annie’s surgical team arrived.  We exchanged a few words -he apologised it had come to this and assured me it was going be okay. Then I was escorted to the door. Whilst washing my hands and binning my mask there was one more opportunity to plead with the sister not to admit her before heading down the corridor.

 Of all the things that have happened over the 8 years this was the hardest moment. Harder than waiting 5 hours for news of the first operation. Harder than the news the tumour had reoccurred. Harder than the news that the chemotherapy was no longer effective. I took a wrong turn and ended up on a different floor -with porters in full PPE pushing patients in masks and staff clocking off for the day. Back in the carpark we phoned Annie’s Macmillan nurse.  She put us at ease. She said the team would phone the ward and reiterate our preference. We went home had some tea and then returned to the hospital to bring some clothes and toiletries. I handed over the bag at the door – there was no way they were letting me in again. I could barely understand what the nurse said to me in our brief conversation. She spoke behind mask and full Covid visor.

Annie was nil-by mouth. If a slot came up in the theatre they wanted her ready to go down to theatre. They were also concerned because her temperature was slightly raised when she’d arrived on the ward. The temperature coupled with the seizures they were concerned she might have an infection. I wanted to scream – but “she’d just been sick- but you wouldn’t let her have a drink of water, but the ward was too hot, but she hadn’t had her usual nap this afternoon!! “ but the door closed in my face before I could open my mouth. During these strange times, the job of a nurse is not to bargain with family members at the front-door.

Once it became clear no surgical capacity was available that evening – they let her have some tea and toast. The following morning nil-by mouth started again. They put her on a drip of Anti-biotics.  She waited the whole day for a gap to appear. Early evening the surgeons returned = said they would get to her later the evening and to continue to fast/no water. Just as I was going to bed a junior doctor phoned me -we are going to operate tonight. At 2:30 am Saturday morning she was wheeled down to theatre. The procedure lasted just under an hour. They basically opened up the stitches and repaired any pesky holes in the dura. They cleaned it all out as best possible and sutured it back up.

When I spoke to Annie over Facetime on Saturday morning -she was in great form. The wound was no longer leaking. She’d had a huge breakfast of Weetabix and toast. It was a complete transformation from the person I had left 36 hours earlier. For the rest of the day she remained on an IV drip and got an early night.

It is not yet clear when they will let her home. Much of this depends on her blood pressure returning to normal (for Annie) and the blood and CSF tests showing any infection is under control. Our home set up and incredible support network means we can offer the care she needs so we’ll be doing everything we can over the next few days to ensure she can come home.

Although unwanted and unexpected, Annie’s stay in hospital has given us a moment to draw breath, to re-pot a few tomato plants and build some dens. We have a  pause in the visits and phone calls. It means when she does get out we’ll be refreshed and ready.

Have you got a hairdryer? (3/4)

Discharge means you leave the hospital umbrella and move to support locally. In our case it is jointly through three services: Macmillan nurses, district nurses and a private sector care provider paid for by the NHS/Local authority.  

The role of the carers is perhaps the easiest to explain. They are commissioned to offer 4 care visits a day – breakfast, lunch, tea and bedtime. Given Annie lives with her family she does not depend on the carers in the same way somebody living on their own would. At first I wasn’t quite sure what the point of the carers was. I wanted to make her breakfast, I wanted to help her get dressed, use the loo. You soon realise this is a very tiring thing to do, especially when you have a three year old who quickly clocks on that there is a new demand on your time. It isn’t unusual for Joe to shout “I need a poo” just as you are counting out pills or fetching Annie a drink. But it is strange to have carers coming in at first. After a few days it became quite normal and I learnt to absent myself- take a shower/read Joe a book/water the plants/go for a walk. Lots of people will earnestly say to you “Hey Steve, accept help” “let them take the strain”. Yes, yes,  I agree but it is not quite as simple as that. Let me explain.

Carers work in pairs – usually one man one woman. It will usually be the same two pairs, each calling twice in the day. But given the need for time off etc – it will sometimes be new people. They won’t know of what Annie can and can’t do. They are not a massive fan of the re-turn mo-lift truck thing and a baffled by the leg brace. It took a few days to fall into a rhythm. We know now to get clothes ready the night before, to have tooth brush, bowl for washing, when to bring the hairdryer downstairs, when to leave out some clean sheets.

On the best days, on the days we nail it,  Annie gets up with us -we all have breakfast at the table – then the carers come and help her get washed and dressed. We go out for a walk or inspect the vegetable patch. We have lunch together – and then the careers come to help her get Annie back to bed for a nap. At the moment Annie is best when she can have a long afternoon sleep free from visitations or calls from various health professionals. This also means we can have tea together and Annie’s mum can spend a couple of hours with Annie one-to-one while I put Joe to bed and I can watch mindless TV with Annie as normal (Friday Night Dinner and Fawlty Towers both regulars at the moment). This invariably means she sleeps through her tea time care visit and it means the carers can catch up with their other clients. As you’d expect they are fully masked up – so we have never seen their faces. They are great with Joseph – putting him at ease and asking him if it is birthday again today. He calls them mummy’s nurses and seems to understand why they are here and doesn’t seem phased by the masks.

When it doesn’t work so well is if they arrive midway through breakfast  or lunch, and as a family group we naturally abandon our conversations in the same way you do when the taxi arrives to take you to the airport. It is difficult to remain normal -Joe picks up on this flapping and finds the loudest toy to hand and starts to scuttle about under everybody’s feet. Annie doggedly chews her muesli and calmly sips her tea, seemingly unfazed as two masked carers wait on in the hall. Thankfully this doesn’t happen too often.

And then we have the Macmillan service. Their capacity to support us is bottomless. (I’ll no doubt write more about them in future blogs so will keep it brief here). Annie has been meeting with the same Macmillan nurse since last summer. They both have one son called Joseph and Annie is completely at ease with her, natural conversation over a pot of earl grey. The situation is different now. Annie’s nurse has to wear PPE and cups of tea are no longer offered or expected. But what Annie’s nurse can do is fix things, sort things and offer assurance to us all. A quick text to Annie’s nurse and the next day Annie’s GP, a Macmillan physio or consultant knocks at the door. It is an incredible service that combines a joined-up-ness you rarely see in hospitals and yet has the headspace to be compassionate. The Macmillan service works really well with the district nurses. They are incredibly considerate our space – they will always check if it is okay to visit and will work around our plans.

I feel incredibly lucky that we have this face to face service during this pandemic. As with the hospital staff and carers , they are great with Joseph. He’ll often become Doctor Joseph when they call – making brief and surprise appearances during their visit. It always helps to lighten the mood and try and make all of this a little bit more human.

In the next blog I will focus on an unexpected return to hospital.

Key figures and Withheld Numbers (2/4)

When in hospital Annie was under the care of her surgeon. She was on a neuro- specialist ward led by a matron/sister etc.  She was being visited by physios every day to work on the process of transition and how to move in the bed. When I asked the physio how I could shift Annie up the bed she said “ask her to move up the bed”. I hadn’t thought of that. Instead I was grabbing her under the arm pit and attempting to shove her northwards. It makes you realise how important that initial physio work is. They are not only keeping you moving, they are telling you how to move safely and how to ward off over eager carers/nurses from doing too much. It is about keeping as active as possible without putting yourself at risk. Annie being Annie, she loves a clear instruction a programme. Years of Pilates is coming into its own right now as she understands how to move and maintain her core stability. The stroke means balancing can be tricky – the physios help you to find your centre, sit straight ready to transition.

As we started to move toward discharging from the hospital the Occupational Therapists, who share an office with the physios, would normally come to assess the home to see what you might need. With the current situation this had to be a virtual visit. Armed with a tape measure I was measuring chairs and steps, door widths, radiators and spaces. Then their role is to put in the order to the Equipment services folk. Where we live this is a matter for the local city council. What I learnt from this process is that although we were using video calls to do training and home assessment – these systems are mainly based on people phoning one another and leaving answerphone messages. Given our house sits in a mobile signal blackspot perhaps the most stressful thing about this discharge process was perpetually missing calls and trawling through answerphone messages from “Withheld” NHS and Council numbers” with questions like – will you be in? = or can you call us back on 0161 228 5blur8blurrryshat,*crackle* thanks bye! To answer a few questions.

If we want updates from the hospital much of this is done through phoning the ward number and hoping they will pick up. If you can speak to the nurses looking after Annie  that day you strike gold and you can usually get 5 minutes to ask some questions. Inevitably one will think of all the important questions once you’ve hung up. But you have to be proactive because they will not phone you.

During this C19 lockdown one of the most reliably sources of information and assurance has been through Annie’s key worker/ specialist nurse -who is a nurse practitioner in the brain surgery team. We find the most successful way to communicate is email. This nurse was working between hospital and home but was online most of the time and able to access notes/assessment/results and also had the surgeon on speed-dial when required.

You also start to realise how hierarchical the NHS is. There are processes and timescale. There are ways of escalating and speeding up processes where necessary. You realise that people are incredibly compassionate. So many of Annie’s immediate care team had small children themselves. Everybody was pulling out every stop to get her back in time for Joe’s birthday. Where necessary the lead consultant can throw his weight behind the plan and it clearly oils the wheels. Yet there is also a firewall that surrounds him. When he wanted to meet with me to discuss the outcome of the operation the communicated with me directly through mobile. In a system based on “Withheld numbers” but it seems inappropriate to contact him when at our lowest ebb. We fall in line and go through the suggested channels.

Everything I have mentioned so far is how we are supported remotely by the hospital. In the next blog I will focus on the support we have at home.

I don’t want our house to become a hospital. (1/4)

In this blog I focus on what has happened since Annie came back from hospital. To recap 15^th April was the 4^th operation. During this operation Annie suffered a type of stroke during and it meant she awoke with a loss of movement to her left arm and leg. She stayed in hospital for 2 weeks. In the meantime we started to make some adaptations to allow her to come home. The deadline everybody was working towards was Joseph’s birthday on the 29^th April.  On Friday 24^th April the news came that they were happy for her to come out on the Tuesday in time for birthday on Wednesday.

Bed

We needed a bed. One of those electric beds that go up and down, with sides, wheels etc. We needed a space for it too – so we took the sofa out of the front room- put it in the back room (where it actually fits a bit better). We needed to transform the front-room into something resembling a bedroom – something that was functional but not too hospital like. We left the hifi, vinyl records and TV as they were. We swapped the chest of drawers for a taller set to have space for clothes and toiletries. We took the net curtains from Joe’s room for privacy. We moved a small book case with Joe’s books to allow him to have a presence in the room and to encourage story reading with Annie once she got home.

Chair

Oh yes and the armchair: we also have a chesterfield armchair in the front-room – it was from a charity shop 10 years ago with broken casters and ridiculously low to the ground when seated. My first idea was to ask my friend Danny to fit me some legs – but the OT said we needed an ideal height of 52cms. That would have meant some pretty bonkers twiglett legs. Dan’s solution was to make a kind of platform out of fork lift truck pallets. Annie’s dad Allan then carefully sanded and stained and, well, it works. It is surprising comfortable, earth-quake-proof-stable 51.5cms, (but it will not be winning any design awards any time soon).

Commode and whatsit

We also needed a commode chair – ( we don’t have a downstairs loo), a wheelchair for getting into the kitchen. To get from bed to chair requires a transition on something called a Re-Turn or a MoLift (in fact it seems every professional we meet has a different word for what is essentially a very fancy porter’s sack-truck on casters). So we needed one of those too – a relift moturn trolly wotsit. We also needed training. Normally you’d go into the hospital to get a demo from the physios but with covid19 this wasn’t possible. In the end we had a Facetime demo which worked pretty well. 

To transition to a wheelchair from the bed there is a meticulous process to follow. In case anything happens to me -I’ll note it down for you here: First job is to locate and fit a metal leg brace to Annie’s left knee. It has four clips that have to be done up in a particular order. Almost everybody attempting this will put in on upside down 3 times in 10. Once on we need to fit a Velcro sling to the left arm. Then with two people- we help Annie swing round into a sitting position on the edge of the bed. Feet flat onto the Re-turn with shins against the front pads. Brake on. Annie pulls herself up into a standing. Once she has her balance brakes off – and slowly turn and roll back to the awaiting chair. When calves touch the front of the chair -stop, brake on. And then Annie lowers herself down. Leg brace off ASAP (it v uncomfortable but plays important role in protecting her knee, whilst also bruising her good knee. Annie's brother Michael has pioneered an innovative solution for this using a travel pillow. I’m encouraging him to publish it in the BMJ). Once in the chair we can loose the arm sling. It works best (and is safest  to do with 2 people – one on each side, but in the middle of the night we are starting to perfect solo missions with minimal light).

Now as you may have noticed, that is quite a bit of equipment to source over a weekend in lockdown.  The bed came very easily. The other stuff dribbled in over the next day or so. It meant for the first 48 hours she was stuck in the bed but at least she was home.

Thankfully we didn’t have to rely on our FaceTime transition training completely as two physios from the hospital kindly came out to see us and supervised us through our first attempts. There’s so much to remember – and all while also making sure we don’t put our backs out. For the first few days I was raising the bed 3 foot into the air to give myself a “safe working height” but frankly it added about 10 minutes to the process. Kneeling is the way forward.

Ramps

With the weather improving we also wanted to have a way to get into the garden. I spotted some Taxi wheelchair ramps for sale online. They are super lightweight and with them we can get a wheelchair out through the backdoor and into the garden and even down the side passage and out onto the street, all with relatively little fuss. The toughest bit was convincing Joseph that the ramps were not exclusively for rolling cars down. The first few times he was very cross about us moving them.

Stairlift

Because our house has one bathroom to get upstairs for a shower would require a stairlift. We were recommended a person who could fit us a stairlift on a rental basis. You get a brand-new stairlift fitted for a fee and then pay a monthly rental. They only take about 2 hours to fit -and sit on the stairs so cause minimal damage/impact to walls/skirting. The issue we had was the landing has one turn at the top. The choice is either a very expensive lift that goes around corners or to build and fit an additional step at the top. Danny’s dad Alan came to the rescue and made such a step using only measurements from a text message. He got the measurements mid afternoon and by 8pm it was fitted and in position. We hope to have the lift fitted sometime next week.

Table

It is only after a few days of using the equipment that you start to work out what you do and don’t need. We started with a plank of wood as a makeshift bed table -but now have one of those tables on wheels. But we also decided to send back an oversized dining chair that didn't really work. In fact we also put all but one of our dining chairs into storage to make space for the wheelchair. Most of Joe’s toys have been filed away upstairs but importantly not all. We are conscious not to medicalise our house and to make it feel to him like he is being driven out by the new arrangements.  After a couple of days we started to get out into the garden with the wheelchair and even started a routine of going for a morning wheelchair vs balance bike race down the former railway track that runs behind our house. The balance bike always wins by a nose.

In the next blog I’ll talk more about the people that are now supporting us.