Isolation update

Three and a half months ago I wrote my first blog as we entered isolation, intending to write regularly throughout our time shielding. As per usual the kids have kept me too busy/worn out to write but I thought it was time for an update, as much of the rest of the country returns to some levels of normal.

Thankfully Steve was furloughed near the start of lockdown which has enabled us to cope! We usually have quite a big care package in place for William which has all had to stop. In term time he would be at school full time, we'd have carers four evenings a week and he'd get 3 nights away every six weeks to give us a longer break. During school holidays I would always have a carer or Nana here to help as it's just not possible to look after the three children by myself.

We've tried to embrace the opportunity to spend this time together. It's been lovely to have Steve with us for so long, to not have to stress about being anywhere on time and to enjoy spending time together just us. We are so thankful that Steve's job is secure, we have a garden space and a house well adapted to William's needs. There's been plenty of moments of stress and tearing our hair out - mostly involving getting Eliza to do school work, getting Eliza to tidy up and Cecily's love of screaming! We are also knackered by the end of every day! We rarely finish getting the children all settled and the house tidied before 9pm and then there's often something else to get on with. Thankfully all the children mostly sleep well so we get a rest overnight!

Things are now starting to change though. Steve is now on part time furlough so needs to find time to work. William's professionals have started to book in some more phone or video calls. Lots of Eliza's class are now back in school and more work is being set. We still have a month of shielding to go and we have no idea when we'll be able to get carers back in.

As many people's lives return to some levels of normality in some areas, families like ours are struggling on with no usable care package. We have no idea what is going to come next in this pandemic. Worst case scenario is a second wave and we have to prepare that we will be the last released from lockdown and the first to be locked back down. We were keen to get some care back in place while we can to give us a bit of a breather in case a second lockdown comes but it's not going to be straight forward!

There are government guidelines in place that all carers should wear PPE when providing care in homes. However, where a carer is carrying out an Aerosol Generating Procedure (AGP) they need to wear full level PPE consisting of a fit tested mask, gown, gloves and eye protection. One of William's medical needs is on this list. Last week we began the process of trying to obtain PPE, but it soon became clear that this wasn't going to be easy! Firstly we were told that Public Health England were reviewing the procedures considered AGPs, so they might not apply to William. We are waiting on a decision on this which will indicate which level of PPE our carers would need. Presuming the worst case scenario, that we need full PPE, we then need to wait to find out who will carry out the fit testing assessment on the carers for their masks, who will train them in putting on and taking off their PPE, and of course - who will pay for it! From experience, these things are never quickly solved so we have no idea when we might be able to access home care again. Furthermore, a lot of the same issues will apply to school, so we have no idea if William will be able to return to school in September or if it will take longer to get things in place. There are many many unknowns so it's just impossible to plan more than a few days at a time.

William needs someone to do everything for him, he needs someone with him all the time. He needs dressing twice a day, nappy changes five+ times a day, feeding three times a day, all his feeds making up, he needs playing with because he can't move independently or see, he needs a full physio programme, he needs moving regularly throughout the day because he can't stretch his legs, roll over, or shuffle off an uncomfortable spot. Every time he coughs (which is a lot) he gets into a bad position and needs readjusting. He needs supporting through a seizure several times a day, he needs his airway clearing many times a day, he needs nebs and chest physio every day, and he needs all this kit cleaned and maintained. Bear in mind, he weighs around six stone and has problems with muscle tightness so anything involving moving him is physically really hard work and time consuming. Changing a nappy on William is nothing like changing one on a baby!

It definitely feels a bit like families like ours have been a bit forgotten in several ways. If we didn't have a big mess over PPE at the start of Covid, maybe it could have been sorted by now so we could have carers. If everyone had followed the rules and exercised more common sense, maybe we'd have fewer cases by now. My hopes of avoiding a second wave are really slim. I often wonder how many of the people not following the rules have nothing much to lose. Maybe they're young and healthy with no one to worry about who is at risk. Meanwhile we have strictly followed the rules but will pay the price of others not doing so by being locked down longer, being without care and respite for longer, and not being able to meet all of William's needs.

The challenges faced by families with additional needs children varies so much, and by no means does our experience reflect that of other families. But it is clear that some of the most medically complex and fragile children, whose lives rely on AGPs, have been left with no practical support for their children.

Who to treat?

In the last few days I've seen quite a few people sharing a link to this petition.

I am certainly no expert in any of this but I just wanted to share what I know and hopefully alleviate some extra worries that we really don't need at this time.

I have a child with a life limiting condition. He has a palliative care consultant and a palliative care plan. Part of his case management is provided by the Symptom Management nursing team at our local hospice where he receives regular respite. He carries on him an Advanced Care Plan and Respect document detailing what we want to happen in the worst case scenario. I have had countless conversations over the course of his life time about what levels of intervention we want for him as and when he gets more unwell.

Decisions around the level of care a person should receive are not decided based upon a person's disability. Nor are they made by a single person. So when I read the petition it didn't sit right with me, because it goes against everything I've been shown and learnt about treatment options and intensive care for disabled people.

I have no idea who started the petition or what article they say they read, so I did my own research. I checked the NICE website initially where I found guidance for those making decisions around critical care. Their page refers to something called the Clinical Frailty Score which is used in assessing what might be the best course of action for a patient over 65, where the ageing process may have started to make a significant impact on their quality of life and ability to recover from a major trauma or illness. There seemed to have initially been some concern around this as someone young with a long standing but stable disability such as Cerebral Palsy would score highly despite being in good health. The guidance has since been updated to stress that this should scoring system only be used in those over 65 with no long standing stable disability.

I then did some general googling and the only other thing I found was this page advising how to support those with learning disabilities and their families. I found nothing about not providing care to people simply on the basis of them having a learning disability or stable physical disability.

It is very possible/likely that at some point soon we will run out of intensive care beds to treat everyone needing one, and somehow medics will then have to decide who to treat. I don't believe this will be done based on disability. I do however think that if William were to catch the virus and become severely ill, he may not be front of the line for intensive care treatment (presuming paediatric services are also overrun or are being used for adults).

Importantly though, this is not because he is disabled. It's not even because he has a very profound level of physical and cognitive disability. Whenever anyone is given intensive care, thought is always given as to whether that is in their best interests. Being ventilated and put on life support is a really tough thing for someone to go through and there is never a guarantee the person will recover. When we discuss our wishes for William we look closely at his quality of life now. We then consider:

• What we are likely to achieve with a certain treatment option and at what costs might that come at?
• If we treat in this way are we going to bring him back to the same quality of life he's at now or will it be worse.
• How much worse?
• Is it so much worse that there is no quality of life left?

We discuss what quality of life looks like to someone like William because it's obviously totally different to mine and yours! William's quality of life is something of a tightrope. Right here and now I believe William has a quality of life worth living. We constantly grapple with what changes could occur that would knock him off that tightrope. Take his seizures for example, he has many a day, some small and some big and nasty. But I have some kind of internal meter that knows when his seizure level is ok and when it's crossed the line and is tipping that balance of quality of life. When we reach that point we take action and so far we've been able to tip it back just enough to maintain his quality of life at an acceptable level.

As we face the risk this virus brings to him, we have started discussions about what level of care we want for him. In a worst case scenario that choice won't be ours because there won't be enough ventilators and William won't be high priority for one. Again, not because he's disabled, but because his level of disability has led to a very complex medical picture for him. He has borderline respiratory failure and his day to day respiratory needs are tricky to manage. The chances of getting him off a ventilator are lower than most people's and the chances of getting him back to the same baseline, or quality of life, as he has now are even slimmer. His baseline is already way below most people's.

We have some things in our favour though! William has never needed ventilating for a chest infection before (miraculously!) and he doesn't have a scoliosis (curvature of the spine - common in people like him) - both things that are unhelpful when facing a horrible respiratory virus. We are keeping our expectations open to whatever could happen knowing whatever happens God is in control.

So if you're a parent of a healthy (or mostly healthy) child with a learning disability I want to encourage you that treatment is never decided based on the simple fact of whether the child has a learning difficulty or disability. There's a much bigger conversation that goes on taking into account many factors. These are absolutely unprecedented times and it seems likely that medics will have to make incredibly difficult choices about who to treat in what way, and we can't know for sure where that cut off will have to be.

Isolation

If you'd said to us at Christmas where we'd be at today I don't think any of us would have believed it.

In the space of a few weeks so much has changed.

Coronavirus was on my radar and worrying me a little bit before it was on most people's. Any respiratory virus is an issue for William and the reports coming from China weren't good. I then started closely following what was happening in Italy via Twitter and I knew we were in trouble. We started socially distancing nearly two weeks ago, gradually reducing what we were doing to protect William. We then withdrew William from school from Monday and Eliza the following day as the government's response ramped up. 

Along with many other families like ours we have gone into strict isolation for three reasons:

1. We don't want William to get it. There's virtually no evidence on what his chances would be of surviving it. There's a good chance it would kill him and a higher chance he'd need intensive care treatment. It's very likely we won't have enough ICU beds to treat everyone and we will have to prioritise who to treat. William will not be high up on the list. I imagine the only thing in his favour is he's a child.
2. We don't want William to catch anything that might risk landing him in hospital (which is not uncommon for him with any respiratory illness). We need to keep him away and protected and avoid the risk of him needing any intensive care. 
3. We need to prevent Steve and I from getting it. William needs complex medical care throughout the day and parts of the night. There's only a small number of people able to provide that. If one of us caught it and went into isolation within part of the house it would be impossible for the other one of us to care for the children and the one of us who was ill. 

We went into this knowing we had at least three months of isolation ahead, trying to care for three very different children with very different needs while Steve tries to work full time from home. It's looking increasingly likely this will be for longer than three months. We are trying to make difficult decisions about care and respite and balancing our need for help and a break with the need to keep William safe.

We're on day 3 now of official isolation. I want to try and blog my way through it as a record of this unprecedented time. Some days I'm hoping it'll be funny. Some days it'll hopefully give you an insight into isolating as a family around a medically complex child. Some days it'll be reflective and thoughtful. Some days it'll just be something for me to do!

So a summary of our first three days....we kicked off day 1 with Eliza upset that Cecily was drinking from her bottle. She told me Cecily would get her germs. What germs are they then, I asked. Coronavirus of course. She quickly back tracked when I told her she'd better move out then!

Thankfully Eliza is currently thrilled to have enrolled at a "new school"! She insists on calling me "teacher" despite me telling her "mum" will suffice. She has created peg pictures for the three of them and insists on hanging coats on the shoe cupboard (despite us having perfectly good coat hooks in the cupboard).

We're keeping it all quite casual trying to make sure William gets some physio each day and Eliza does something learning-y and not just watch Shimmer and Shine all day long. This has been relatively easy while her enthusiasm is high! I'm trying to enforce "playtime" each day where the girls go out in the garden for a while so me and William can enjoy some peace and quiet! Some warmer weather would be very welcome!

Some lovely teacher friends have sent me some ideas and resources and I've joined a couple of websites for free print outs which is providing plenty for Eliza to do. I also joined a bunch of covid homeschooling facebook groups in my enthusiasm but have quickly unfollowed them all because it's information overload. Also, most people aren't try to homeschool while caring for a child like William, so I'm just going with the flow!

Tomorrow we're hoping to set up a snack shop to stop Eliza eating the entire snack contents of the house! (Why do they want endless snacks but never want to eat their actual meals?!)

If you are not in the vulnerable category and are able to get out and about and are local then please shout if you're able to help with our food shopping. Hopefully once the shops settle down it'll be much easier to shop online again. If you want to drop us a letter or chocolate bar through the door feel free! It's lovely to have contact with people that isn't just online. I'll post specific prayer requests as we go for those who want to be praying for us.

For now here's some highlights of our first three days! Obviously this is the internet so I am only posting the photos that make it look like we've had the most wonderful three days ever and the children have all been absolute angels. I decided it was best to leave out details of the 30 nappies we've changed in that time, the horrendous nappy rash C has, C's "delightful" new way of communicating to us (more on that to come), when C got her head stuck in William's chair, when we discovered C wondering around with an unlidded navy felt tip pen.... and the 5 million hours I've spent trying to put William's gaiters on!

 

Cosmic yoga!

Sensory story time 

School corner!