The things you learn

I've been a parent of a medically complex child for nearly ten years now but there are still moments when I stop and think, "How do I know this?! How did I get here?!"

Tonight I had one of those moments...

William spends about 80% of is life lying on his right hand side. When he sits for long periods he tires and his breathing deteriorates. When he lies on his back his tongue falls back and partially obstructs his airway. When he lies on his left his digestive system doesn't work properly! His uncooperative muscles 

https://www.thoughtco.com/anatomy-of-the-stomach-373482

are seemingly too lazy to push the food in his stomach up and out into his small intestine, which when you're a type 1 diabetic isn't ideal! The food just stays in his stomach and his blood sugars crash down as no food is being absorbed. If you look at a diagram of a stomach you can see the exit is on your right hand side, so when William lies on his right gravity helps it work properly!

But now for the first time we think William has a pressure sore on his right ear! So we really need to give him time off his right ear. This is where I was tonight...his first night going to bed, not on his right!

He has his tea in bed so he can't be put on his left until his tea has made its way out of his stomach. But he can't stay on his back all night because his breathing won't manage that long on his back. So the plan is to start the night on his back, let his tea digest a bit, then roll him onto his left when we go to bed. So I begin trying to make him comfortable enough on his back to go to sleep, which is something he never usually does. He needs to have his head raised to reduce reflux, he needs to be lying straight to keep his spine right, he needs his legs together and not frogged to help his hips, and he needs blocks to keep him in place when he coughs or moves. Then I decide to add a little roll behind his neck to tip his head a bit and help open his airway and lift his chin. We leave the sats monitor on him to check he's breathing ok while he's on his back. 

As I stood there looking at him hoping he was comfy I just thought, how do I know all this stuff about how to position someone in such a specific way! How do I know what to put where to get him in the best position for him? How have I learnt how to help his airway stay fully open!

About ten minutes previous I'd changed his insulin pump cannula which often leaves me thinking, "I can't believe I know how to insert a subcut cannula!" 

As a group, parents of medically complex children know how to do a lot of procedures. We usually do them so often we could do them blindfolded! Steve and I can change a gastrostomy button, provide oropharyngeal suction, insert subcut cannulas and CGMS sensors, take a blood sugar, take a blood pressure, get William in AFOs, gaiters and a standing frame, give suppositories, give nebulisers, give chest physiotherapy, collect samples for testing of just about any kind, use a pulse ox, hoist, fix a wheelchair, adjust headrests, give epilepsy rescue meds and provide oxygen. There are other parents who know how to keep their child alive on a ventilator, change a tracheostomy, provide CPR, manage complex pain, catheterise, give parenteral nutrition, and many many other medical procedures!

Most of us never anticipated this would be our lives. We didn't set out to be nurses or drs, and our training is often a half hour lesson at the hospital. And yet here we are, often surprising ourselves with the things we've learnt and regularly wondering, how on earth did I learn to do this! So next time you see us doing something and you find yourself thinking, "I don't think I could do that!" remember that we do it all the time and it still sometimes surprises us that we can! 

(...Turns out 11pm is the limit to back lying - he's just started having apnoeas so time for a roll!)

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.