In this blog I focus on what has happened since Annie came back from hospital. To recap 15th April was the 4th 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 29th April. On Friday 24th 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.
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