Long time no blog due to life getting super-hectic. Since Freya’s birthday we have packed up our old flat, painted our new flat, painstakingly moved all the stuff in to the new flat from the old flat, made several trips to Ikea, bought and installed all new white goods in the kitchen…. And Freya has undergone another jaw surgery (the first one didn’t work), had a long but successful discharge and has started on the blended diet (as Freya is exclusively fed via her feeding tube I am now blending real food items and mixing it with breast milk to feed her, instead of having her on medicalised formula). In addition, I have obviously managed to pick up a few fights along the way (of which I will, undoubtedly, write more about in due course).
What I wanted to write about today was what it actually is like being at home with a child who has a life threatening condition.
Your home becomes a mini-hospital. We have the people, we have the equipment. We have people in our house a LOT of the time. Mostly we have carers and nurses looking after Freya – we get 80 hours of carer time a week to allow us parents to sleep and do things we can’t do during the day when our lively one-year-old is on a rampage to destroy all things she can get her hands on. In addition, we get regular visits from the community nursing team, specialist trained nursery nurses, dieticians, physios, speech and language therapists, social workers, visitors from the care company and the occasional a doctor or two. The list continues. And it is a massive adjustment – we are private people and like to enjoy our home…alone. After 5 months of hospital I can feel my Nordic roots are coming out and I dream of being a hermit in a cottage in the forest for a month (or a few!) it ain’t happening. But, as we know from our past experiences, loss of privacy is a small price to pay for being able to sleep regularly. And the ladies looking after Freya are lovely and love spending time with her.
We also have a mountain of medical equipment. Suction catheters, feeding tubing, trachy dressings. Vent tubing, neb sets, trachy tapes. HMEs (at 4 different types!). Suction machines, ventilators, feeding pump. Spare tracheostomy tubes, the emergency tubes type 1, emergency tubes type 2. You get the idea. It’s endless deliveries, a flat full of boxes. Moving into an unfurnished flat last few weeks feel like an endless assembly line of flat pack furniture, whilst boxes and boxes of medical equipment arrive slowly take over the flat.
Your pace of life slows down. Everything takes time. When Freya wakes up she is usually full of snot. So we need to suction a lot, give her some nebulisers, suction some more. Freya’s taken up a lovely habit of vomiting so we spent a lot of time planning her feeds and doing it in a way she can handle them puke-free. Although we are lucky that Freya only has a few regular medications these need to be prepared and given.
Freya comes in some baggage. As it wherever we go we need to pack up her pram (appropriately named “the donkey”) with huge amounts of medical equipment on top of all the baby stuff. Oxygen anyone? We always have a spare cylinder. Fancy a neb on the go? We’ve got some saline! There is no such thing as popping over -well – anywhere. We navigate between naps, nebs, meds and feeds, wondering whether our outing requires us to pack up a spare ventilator.
At night when I hit the bed I wonder how little we actually manage to do. It took me two weeks to have my hair cut. This is with me not working, And Freya’s dad being off for a week. When I think of how much we medical stuff and baby stuff we do and feel pleased of every achievement. Like they say – slowly slowly catch a monkey. We might actually be unpacked by Christmas at this rate. But we are getting there.
You can’t drop the ball. There are no leisurely lie ins together – when the carer leaves at 8 one of us needs to be up, rain or shine. Freya can’t make any noises over her trachy, and although we have a saturations monitor that beeps if her oxygen levels or heart rate drops she can’t really be left unattended. Obviously needs must, so we would be fine to have a loo break or pop to another room, but we wouldn’t ever be out of earshot for more than a minute. So some everyday tasks like taking out the bins or showering can only be done when both of us are at home.
Freya’s under nine medical teams in three different hospitals. She’s got OT, PT, SALT and dietician – both at hospital and in the community. So we have a LOT of appointments. We get deliveries from oxygen supplier, medical equipment company, medical feeding supply company and have variety of items and medications we need to get through our GP. We need to constantly know what we have and how much – you can’t run out without an order been placed ages ago, or risk having to spend hours of chasing up spare equipment from the community teams or heading down to central London to loot a hospital.
Besides all this “admin-type” stuff the fact remains that Freya keeps us on our toes – we have had dramatic deteriorations where we have had to call 999 and fight to keep our little princess alive. You can prepare – we have a hospital bag and a hospital folder we all key information and contacts already packed up and ready to go – but you never get used to it. You truly never feel as helpless as when you have a child losing the fight in front of your eyes and you have to trust strangers to be able to save her. You can never really be sure of what the day will bring. Last time we had to go to the hospital from home a completely ordinary Tuesday morning turned into a dramatic race to get to intensive care in time – and we ended up spending 5 months on that one trip.
It’s scary but it’s worth it. We’ve had long spells in hospital since Freya was born and we have had many homecomings – some more successful than others. The return may be much waited and desired – but it also is scary; how about if things go wrong (again)? Will we be as lucky? How about if Freya’s general condition deteriorates? How will we manage?
One thing I have learned is that you can’t be afraid of your own life. The cards you have been dealt with may not be the ones you expected to have. The challenges you face may feel momentous compared to the obstacles you have dealt with in the past, but you can’t live in a prison of your own fears. People often think that parents who are dealing with a serious ill child are a crumbling mess, crying in corner, inconsolable. Yes, we are, sometimes, but most of the time we aren’t. Breaking down is a luxury many of us cannot afford – we just need to keep going for the sake of our children, our partners, our families. For the sake of ourselves. We get up, we live. We fight harder than we ever imagined we could, and we preserve. We have one goal – to make sure that our little people have the best of everything – and we don’t care whose toes we step on to get it.
And we love with an intensity of knowing there might not be tomorrow. More I get to know Freya more I suspect that in 50 years’ time she will be wheeling me into an old people’s home tired of my endless stories about hospitals, snot and how I spent her first years on warpath getting her the best of the best. But I know things may turn out differently. So we try to enjoy our days as they come, rain or shine, home or hospital. After all, life is what you make of it.