Here Leanne tells us more about their experiences and how her and her family are managing during this extended stay in hospital.
Kai came in with respiratory issues after he was really poorly over Christmas. It then turned out that he needed home ventilation, because his lungs weren’t functioning in the way they should. He was having multiple collapses, like small collapses and he was really struggling.
Kai has severe medically complex needs. He’s severely brain damaged; he’s got less than a quarter of his brain and the rest of it has turned to cysts. As a result, he also has Lennox-Gestaut Syndrome, which is a form of epilepsy.
He has full body cerebral palsy, with spastic tendencies. He has dystonia, developmental needs, visual impairment, hearing impairment, he’s tube fed, the list goes on.
Kai is five now, so he’s had his diagnosis, with lots of different issues all at once. We seem to tackle one issue and then solve that one, then a new one appears, but this is the longest spell we’ve ever done in hospital.
Our family is split up for most of the week, with my partner having to try and hold down a full-time job whilst we’re here. And we have a 17-month-old baby girl as well who has been really affected during our stay – her anxiety has got quite bad.
We split most of the week up and we’re not often together as a whole family. We also have dogs at home, so somebody has to be at the house. But it looks like we’re going to have to rehome them even though we’ve had one of them for 9 years, their anxieties have also gone through the roof and it’s so difficult for us to look after them in our current situation.
Kai’s deteriorating overall and he’s probably going to be yoyo-ing, especially during the winter months at least, which means we will have lots going on for him in the coming months.
Coping
We just keep going. That’s my mind. Just keep going and try and do it with a smile on my face.
And if you haven’t got a smile on your face, take a break, even if it’s just for five minutes.
I think that’s what a lot of people have to do in situations when they’re in hospital for a long time.
You can get a bit of cabin fever being in here and it’s easy to get frustrated because you have to speak to different doctors all the time, you say the same things and you feel like you’re repeating yourself some days, going over and over it again.
It’s not the same team around your child that knows them inside out. That also gets really hard because they’re not used to your child’s quirky little ways or what’s normal for Kai.
You then have to build up that relationship and they have to get to know Kai and see the patterns for themselves, and that’s quite difficult.
So, when you’re at home and you’ve got your setup it’s all easier, because you’ve got a really good team around him that just know and understand.
Unfortunately, we don’t have 24/7 care at home, and Kai doesn’t currently attend school, so the hours that we do have nurses is absolutely amazing as that’s the only form of respite that we get.
Managing away from home
However, many miles away you are from home, we’re just trying to live.
We’re so lucky that we have a lovely place like Ronald McDonald House upstairs that gives us somewhere to stay, but I still need to be here with Kai the majority of time.
The nurses are amazing here, but they don’t necessarily know him well enough to know his full routine and because of how complex his needs are, I need to be here to do everything else. This means I don’t get a chance to go and cook dinner, so we live off microwave meals, which is very boring, not healthy and financially it’s a burden.
It’s so much more expensive to try and live from a hospital than at home and you’ve still got to keep up with your bills and running your home, which is really hard and then you’re buying meals on top of that.
There isn’t a great supply of things that you could just go grab at the hospital. There isn’t a restaurant on site that can cook a decent meal for a decent price.
I think that’s one of the interesting things that people don’t often think about a situation like this. They think that if they have a sick child that they’re in hospital and they’re looked after, but they don’t then think of all the other practical considerations like who’s going to stay at the hospital the whole time, where are we going to live, how are we going to eat and pay the bills.
If I wasn’t here, Kai would be left in a room by himself, which medically he can’t be. And as much as on HDU it’s a 2 to 1 ratio of the nurses, they can’t be with the him 24/7.
Kai is non-verbal so he can’t call out if he’s in pain. He can’t indicate if something’s wrong. He can’t indicate if he’s flops his head down and actually can’t pick it back up. So, he has to have someone with him 24/7.
I don’t get to live the life of Riley while my child’s lying in a hospital bed and go off and look after myself or, my daughter, or my relationship, or the dogs at home that need someone to love them. It just doesn’t happen like that.
It’s actually a very inconvenient way to be living for such a long period of time. There are other families out there that live like this for so much longer than us and hats off to them because this has been our longest spell.
And we’ve probably still got another month and a half to go, with recovery time from the surgery to fit the stoma as Kai’s digestive system is shutting down which is then playing havoc with the respiratory system. It’s just a vicious circle.
We’re really just living from day to day. And you work out a plan for one week and then the doctors coming in and tell you no, that’s not happening, so you’re like, OK, we have to move it all around again.
It’s physically and emotionally exhausting.
Moments of lightness
There any moments of lightness, like the support from the Play Team, the music team coming round, and the massage therapy that I would not live without!
The massage therapist comes in and gives Kai a massage and then she gives me a little massage and that’s like your ten minutes to breathe and it’s OK to relax.
Having those moments has been really good.
Hope for the future
I’m hoping that after this long stay, and when he gets his stoma in place, Kai will be more comfortable. There’ll be less reason for us to be in hospital, or if we are in, we won’t be here as long.
Until the next set of deterioration. That’s the sad reality. We know what’s coming, we know what’s further down the road. We know what all these signs mean and sometimes being in the hospital, it’s easy for the medical team to forget that actually we know what all these things mean.
There’s more of an understanding of what our lives are going to look like, and I think it’s easy for the emotions and the mental side of it to feel overwhelming. You don’t necessarily know what this next development will be, but you do know what it means. It’s one step closer to the inevitable.
And until you experience something like this, it’s impossible to know how you will manage or what can help you get through.
Having a sick child is always difficult, but having long periods in hospital makes life even harder. Not only are you worried about the outcome, but your whole life is impacted.
You might not live close enough to the hospital to be able to get home everyday, so you have to work our where you can stay that’s close by.
If you have a job, you might have to take time off which can seriously impact on your financial situation; how will you pay your rent, mortgage or bills without an income?
If you have other children, who’s going to be looking after them, taking them to school or putting them to bed while you’re at the hospital?
And if you have a partner, how do you manage making time for each other and both spending time with your sick child, whilst one of you may be working and looking after siblings and a home?
There are so many aspects of having a child in hospital for a long time that people just don’t see. But we do.
We provide Parent Packs for parents that weren’t expecting to be admitted to hospital, a Wellbeing Service to support children and families with their mental health and wellbeing during their stay, toys and activities to help children have something to do during the long hours stuck in bed, and a special Champions Fund to help families struggling with the cost of food or transport.
Can you help us support families like Leanne and Kai?