Enduring Admissions

It’s a sleepy, late afternoon. Cali is upstairs in our bed with C. I can just about hear her coughing followed by a wail of pain, then the noise of the suction machine starting up again. After days of seeming immune to A’s constant drip of toddler snot, Cali has finally caught the cold and it’s hit hard. Using the wisdom we’ve acquired from being here many times before we’re swapped her blended diet for a slow pump feed of baby formula, given paracetamol rectally, attached her to a sats monitor and covered her feet in Vicks.

A is in the front room with my mum, I can hear the hypnotic drone of the “In the Night Garden” music. My mum has come down to help me out whilst C takes a short trip to Spain. I had a rich diary of plans for us all whilst C was away, but in the early hours of this morning, after much agonising, we decided Cali was too unwell and C needed to cancel his trip. We’ve had to cancel plans many times before, but this must be the hardest. C’s bag was packed and he had allowed himself to believe he was going. Earlier, as I was texting a friend to tell her not to come and visit this weekend after all, I received a message from another friend whose daughter has Edwards Syndrome. She needed to vent because her arrangements are also on the verge of being cancelled as the hospice might not be able to take her daughter for respite. We commiserated with each other. We know how it feels to live a life where you can’t get too attached to plans.

I’ve got a million things to do but I wanted to take a few minutes to write this down. It’s an experience only too familiar to families like us with medically fragile children. The wait. The wait to see if we’re heading to hospital or not, the wait to see how bad it is. The “unwell waiting zone” is a strange place; out of time and out of step with the rest of the world. When we are in this place all the important things that we thought we needed to do are simply dropped, and life is just about keeping the spokes of the family wheels rolling over. Meals, medicines, supplies, trying to keep things light and bright for A. During these times we’re on a pendulum, swinging between relief and worry as we monitor Cali’s symptoms, her sats and her smiles.

Earlier I packed Cali’s hospital bag. I have a pre-prepared list so that no matter what state I’m in I pack the right stuff. Whilst I was doing it I tidied Cali’s room again which quickly becomes squalid in times of illness. Ensuring there is order in her room is one of the things that feels essential to my well-being, and never more so than when she is ill. Seeing all her things awry and messy make me feel anxious and out of control. I’ve a hunch my anxiety about chaos is a reflection of my anxiety about her death, the thing I can’t control.

And yes, as I folded up her tiny clothes, separate more suction catheters for the night, pile up the dirty washing and slowly reassert order in her bedroom, I had the thoughts. Is this going to be the one? The time we take her to hospital and come home without her. I felt that freezing gust of a Cali-less future blow through my mind and settle somewhere in my chest. I imagined this bedroom without her in it. I think about her funeral and the songs I’ve already half chosen. I never really get beyond that, my imagination won’t let me. Instead my practical mind starts cycling through all the things I’d have to do once she was gone. I’d have to cancel her prescriptions, call the DLA, give her equipment back... I’ve learnt to forgive myself for moving so quickly from the unspeakable horror of losing Cali to the vague pleasure of disposing of all the trappings of living with a very complex child. “Doing mode” is my coping mechanism against “feeling mode”, when I am organised I feel good, I feel a bit more powerful.

Since Cali was born four and a half years ago she’s had 11 unplanned hospital admissions, 9 of these have been respiratory related. When she was little her colds would spread onto her tiny chest and turn into bronchiolitis. Now she’s older, she’s stronger in many ways, but she’s developed a bad scoliosis, which a recent MRI scan has shown is already compromising her left lung. These days this is where the viruses colonise and cause havoc.

With the exception of the Spanish admissions which were terrifying for their own distinct reasons, undoubtedly the worst hospital admission was Cali’s first, when she was 6 months old. We were very new parents and didn’t see Cali’s illness coming at all. I’d noticed the cold symptoms and I remember suggesting it was to do with teething. I’d heard friends making this connection and back then I was still optimistically believing that our version of parenthood could still have echoes of everybody else’s. A few hours later I was clutching a wracked, vomiting Cali and trying to speak coherently to 999 whilst C was belatedly attaching a probe and discovering Cali’s sats were in the low 80s. As we were blue lighted in I remember feeling utterly spent and wondering how I was ever going to cope with a life which could spin from a cosy evening at home and a tenuous normality, into full crisis under the bright lights of A&E in just a couple of hours. How was I going to survive loving a daughter whose health was this precarious?

Once in hospital Cali’s wonderful respiratory consultant told us gently that the next 24 hours would be crucial. We might be about to lose her, which is what we’d been expecting. But Cali’s body wasn’t done yet. Slowly, slowly over the next two weeks her immune system fought back and she dragged herself back to wellness. And throughout that time nobody mentioned her syndrome, they all thankfully just treated her like any other child that needed their care. That winter Cali had two more long admissions for bronchiolitis and the warm, friendly ward soon felt like home. We got to know the nurses, picked up the lingo and started to understand Cali’s medical needs better. I let myself become institutionalised. Back then surrendering responsibility for this complex little creature, who we were only just getting to know was, to be honest, a blessed relief to me. I didn’t feel equipped to care for her on our own. I think C might have felt the same, as when I look back at those first winter admissions, alongside the terror, grief and anxiety I also remember so much love, affection and laughter between C and myself. Being confined all together in the hospital actually felt better than trying to figure out how to live our lives with Cali in the outside world. In hospital all we had to do was love Cali and feed ourselves. Easy…

…Back in the present, and the wait goes on to see if Cali is going to hospital. We assume she’ll sail close to needing it but after a few more days she’ll start her slow ascent back to health. We assume this mainly because C has cancelled his trip to Spain, surely that means she’ll get better and leave us kicking ourselves for overreacting? That’s how children work isn’t it? …

….Wrong. The double bluff. Two more days have passed and we’re in hospital after all. Cali’s sats slowly slid down and her breathing became too laboured for her to manage without oxygen any longer. We at least managed to arrive in daylight and I found myself on the ward with Cali by early evening, facing my first night shift since A was born two and a half years ago.

My first night back in hospital with Cali was both hard and special. Even though the signs seemed to be showing that she was holding her own she seemed so unwell that I felt very fearful. As we talked about how to deliver oxygen and whether to put an IV line in I felt lost and unsure about what she needed. Poor Cali was a mess, crying piteously and unable to sleep – which I became convinced was related to obstructive sleep apnoea. It felt like nobody was listening to this, they told me the not sleeping was an aspect of being unwell. I remember feeling panicked that I would not be listened to if things got worse, or that I would make the wrong decisions. The doctors departed, and I was left alone with my miserable little girl who seemed too unwell for me to possibly help.

After a while I got into bed with Cali and remembered how singing had gotten us both through many a night in the past. I realised that there were certain notes and songs which she responded to and I found myself crooning strange noises at her. I was having one of those moments of “parental knowing” where slightly psychically, it seems, you just know exactly what your child wants. Strangely it wasn’t just what I sang, but how much of myself I put into my singing that made the difference. I relaxed my body and allowed myself to feel the emotions that I’d been holding at arms length all day - sadness, fear and love, and as I felt them, I channelled them into my singing, and I saw Cali relax. It sounds nuts, but by me truly being with her, emotions and all, rather than just rushing around trying to make everything better by doing things, she finally stopped crying and her eyelids drooped into sleep. Her heartrate dropped and her sats picked up. “Doing mode” might protect me from my emotions, but “being mode” was much better for Cali at that point.

By 2am she was deeply asleep, just as the doctors finally returned to try and offer a solution for her restlessness. Typical. And just as they left, a nurse banged in and dropped something heavy on the ground - what human could possibly be strong enough to carry something that could make such a clatter? This woke her up. A thousand times typical. Ah nights in hospital, it seems some things don’t change….

…Two more days have passed. C and I are taking it in turns to do the nights. We swap shifts, have a “handover”, munch sandwiches and then one of us stays and the other one goes home with A. My hospital experience is so different now than it was when Cali was much smaller. It’s not a secretly welcome forced “stop” like it was back then, but it is what it should be; a worry, but also an inconvenience. Four years on and I feel like I have a life again that I want to get back to, rather than just the destitution of a new born baby with a dreadful life expectancy. I have two children now, a job, new friends, my Buddhism course I don’t want to miss. Cali has her own life too. Noticing how my hospital experience has changed really underlines how far we have all come. I’m really proud of us all. I’m really proud of myself.

Hospital is lonely. I no longer let everybody know when we are here. Why is that? Because this is our life and it doesn’t feel extraordinary any more. Once we know Cali is going to be OK it’s just a waiting game, our waiting game. One of Cali’s classmates is a few doors down and knowing her mum is there, sitting the same vigil, helps a surprising amount with the loneliness, even though we’ve only seen each other for snatched conversation. It helps that I now know other people for whom this is normal. It’s not lack of conversation or friends that makes me lonely, it’s lack of commonality.
Cali is going to be OK, her breathing is better, her oxygen is being reduced. She’s avoided having an IV line in her already damaged veins. As I write she’s lying in bed staring jadedly at some projections on the ceiling, idly cycling between inspecting her hand, twiddling with her Optiflow tube and crinkling the skirt of a doll. We’re waiting to hear if she’s got a known virus or if it’s a bacterial infection, or both. As predicted it’s that little compromised left lung that’s causing the problems.

…24 hours later and not much has changed. I’m feeling short with the nurse who has made a series of errors, including telling me that Cali has rhino virus (the common cold). When the consultant arrives I found out that she’s actually got RSV, another cold virus, but one that is renowned for it’s seriousness. Cali was vaccinated against it for her first two winters, and when she finally caught it in her third she needed two weeks in HDU before she was well again. I feel proud that this time Cali has managed the virus much better…

Time drags on, Cali remains in limbo between ill and well, oxygen is weaned down, then tweaked up, nothing really changes. A merry troupe of nurses, doctors, physios and sensory workers all come and go. We’re both bored and lack lustre. She’s feeling too rubbish to try and communicate and is lying stony faced with one hand on her ipad. Not knowing how long we’re here for I’m trying to plan the logistics for the rest of the week but my mind is not working and I keep leaving one of us stranded somewhere without a car, or else forgetting that I have another child that needs to be included in the equation. C is stressed, he’s trying to combine his busy season at work with hospital and we’ve just had a horrible accusatory phone conversation. I’ve just been filling out a funding form to get some money to help support me as Cali’s carer. Impulsively I suggest on the form that we use the money for couples counselling. Mostly we’re not too bad, perhaps no worse than many other couples with two young children. But keeping our relationship close can often feel like a thing too many to care for, and the stress and fear can be particularly corrosive. I get a message from another mum whose child is in Cali’s class at school and feel a lot better. C turns up, gives me a hug and we apologise. I feel a bit mortified that I’ve just asked the council for relationship counselling….

Whenever I am in contact with medical professions I try and use the opportunity to educate people in what I think they should know about Edwards Syndrome, and this admission has been no exception. Cali has an incredibly loud heart murmur, and consultants with a teaching load often ask if they can bring trainees in to listen to it. I agree to them inspecting her in return for me talking to them about Edwards Syndrome. I have a patter now, I ask them what they know about T18, normally very little, I then tell them what I think they need to know. I tell them that some of our children can live well if they are given medical support, that they can have a good quality of life despite their challenges, I tell them that termination is not the best thing for all parents and that even three minutes with a much loved baby can feel less heart breaking than feeling forced into believing your child never had a chance. I’m careful to be realistic, I know that chances are slim with Edwards children, but they do exist. I also show them a picture of Cali when she is well, grinning mischievously. It has to be said, her present sullen condition is hardly an advert for quality of life.

They then listen to her heart, examine her funny mismatched feet, her scoliosis and ask about her NPA. Everybody is respectful and polite and I have no idea if I come across as a ranting, deluded soap box pedagogue or a reasonable, articulate person making her case for her child’s syndrome. I know these sessions leave me exhausted and emotional. Even though nobody is asking me to I am arguing for my child’s right to life and desperately wanting them to see the value in Cali.

…Finally I come on shift to find Cali smiling, interactive and decidedly herself again. She shrieks happily when I come close and grabs my face. C has been zooming her up and down the corridors in her pushchair and suddenly home is in sight. A night without oxygen confirms she’s ready and now I am sat, bags packed, waiting for the doctors to arrive to give us our marching papers.

Incredibly it’s only been five nights in hospital, it feels much longer. It’s been quite a journey since Cali first became ill 10 days ago. I feel the grim reaper step away from her shoulder and know how quickly we’ll return to acting as if she is going to be with us forever. It’s just another hospital notch for Cali’s cot and now it’s time to go home to recreate normality, where the only sane thing to do is push the fears away and keep building a life for all of us together, for however long it lasts.

Now where’s that pharmacist with her meds and the doctor with the release papers?