This week Zachary goes into hospital for what we call ‘a sleepover’. This isn’t a sleepover in it’s social childhood term of midnight feasts, onesies and overdose on E numbers. This is a slumber party care of the anaesthetic team. A medically induced sleepover that creates two opportunities: one for the radiologists, neurologists and paediatric consultants to really take another good look inside his brain and spinal cord and two, for mummy to spontaneously freak out when Z drifts into the land of nod.
For anyone who has held their child as the Drs send them off to sleep, for anything from a tooth extraction to scanning to major surgery, we all know that it’s no barrel of laughs. As many times as I have had to do this so far, I still never get used to it. It never gets easier. Both Zachary and Reuben have totally sussed what it’s all about and as soon as the gas mask leaves its’ station from the anaesthetic machine they KNOW. And they fight it. It never ceases to amaze me how despite their cerebral palsy, in an anaesthetic room they suddenly develop the core strength of Thor. No amount of bouncing Tigger toys, singing or waving of sparkly wands from the staff nurse will distract them from the task in hand. They hate it, I hate it and that primeval mummy instinct of scooping them up and running away from the scene to protect them kicks in. Of course, I have never actually done that as logical mummy also kicks in and knows that this sleepover will benefit them even if it sends me into an emotional spiral.
My husband frequently offers to go in for the anaesthetic procedure, but I can’t let him as I know it’s a job that I personally want to do. I have a little routine. I sing to my boy little songs into his ear (though without his hearing aids he probably isn’t getting the full effect of my dulcet tones) as he flays his arms and tries to kick everything and anyone away from him. A bucking broncho would be proud. I have him in a tight hold as the Drs do their thing, accompanied by a lovely dancing nurse with her sparkly wands, as his green eyes roll and his little body goes limp. A good rendition of an episode of the Krypton Factor then occurs as the staff all transfer him swiftly onto the bed, trying not to tangle him, me or a nearby SHO in the leads and wires they need to keep him safe. I then raise from my stool, and exit the theatre within the gentle hold of a nurse who has a box of tissues in hand ready, whilst I throw the anaesthetist a look which without words screams ‘you best wake him up again…’
And then I leave. And I wait. I wait on the children’s ward with a whole bunch of other parents who will be doing exactly the same thing as me that day. I wait, sometimes for hours, sometimes for not long, dependent on the reason for the sleepover. I wait until the recovery team call me and we do the whole thing in reverse. Only this time I have a burning urge to hug the anaesthetist who brings my baby back from his deep sleep.
I’ve always been bowled over by the kindness of the staff in these situations. We’ve been very blessed to receive great care and huge levels of understanding. I bet many of them have sat on my stool with their own children who’ve had their own sleepovers. They do this day in day out with hundreds and hundreds of children, yet I’m lucky to have never felt like we are on a conveyer belt. I’ve felt hateful my baby has to undergo this, but felt cared for the staff who at that moment dedicate their time to us. On many occasion, more often than not, the staff have said at the point I’ve left him asleep ‘we’ll look after him mummy’. This may sound ridiculous as of course they will…that is their expertise and what they are there to do, but just someone saying it to you and looking you in the eye speaks more than just those 5 words. It says everything. I have trusted them with one of my most three precious things in the whole world and at the time I hand him over so they can do what they need to do, I’m vulnerable. We’re both vulnerable. My baby is vulnerable laying there at the mercy of their medical knowledge. My husband is vulnerable, sat outside the theatre hearing me sniffle and Bucking Broncho kicking off until it goes quiet.. My own parents are vulnerable as they sit at home wondering if everything is ok. Equally my sister is vulnerable sat up in London at work, not being able to be on hand to check things are alright. His medical care isn’t confined just to him as the desperate need and will for them to look after him extends across a whole family and network of friends, everyone that loves him. It extends across counties and countries. Care for a patient extends to more than just physical need, it extends to caring for a whole family in effect as that whole family love, adore and could not exist without that tiny person who hopefully is having sweet dreams as a result of their anaesthetic gases.
For us, a lot of the anaesthetics Zach has are for scans. MRI scans on his brain to monitor the sheer delights meningitis has dished out. This means that even after he’s awake we have to face the next wait for the results. I liken that wait to torture as we wait to hear of any new developments that might have attacked his little but beautiful brain. It was only last year that they found the growths in his spinal cord they were never expecting…
As much as I can explain relatively jovially with a serious undertone of the way I fear the anaesthetic bit, I find it hard to actually describe the gut wrenching emotion that occurs when a team of medics arrive at the curtain by your child’s bedside with a set of results that make your blood run cold. ‘When the team arrive’ with grave faces and tell you stuff that knocks you for six as your precious little person sits there playing, blissfully unaware of how a scan report can break your heart.
I’ve been a common recipient of ‘when the team arrive’. Sometimes there’s been only two or three in The Team. One time there was 7. That’s more than a 5 a side football team. There wasn’t a lot of room left around Zachary’s bedspace that time. It certainly felt very empty and sparse though after they left me with only Zachary and bad news to keep me company. With the exception of one occasion that will haunt me until the day I die, (least said about that the better), those ‘teams’ have always been helpful, empathic and kind. Though this softens the blow slightly of the news they are delivering, it is not easy. Not ever easy. The ‘team arrived’ to tell me Reuben had had his catastrophic brain haemorrhage. The ‘team arrived’ to tell me Zachary’s meningitis had returned and he was so sick they needed to re ventilate him. The ‘team arrived’ when Zachary stopped breathing as I was ushered into a tiny room to wait to hear if they’d saved him or not.
I remember that particular day like it was yesterday, how it felt in a tiny little broom cupboard waiting room, knowing nothing. I had left him as they bagged him and gave him cardiac massage. They told me to go and they would come. There was no more room around his incubator, they were more important to him than me at that time. I needed them to save him.
In that thirty minutes I ripped up a pocket sized pack of tissues into a thousand pieces. I looked at the tiny woollen hats that had been donated by talented and generous knitters, wondering if I would need anything like those after that day. I repeated over and over and over again ‘please be ok, please be ok’….I remember bargaining in my own head things like ‘if you make it, I’ll never shout or tell you off..I’ll read you extra stories at bedtime…I’ll dedicate my whole life to you…’ I read posters on the wall, ironically one warning about the dangers of Group B Streptococcus infection – recalling it from my midwifery days, yet suddenly feeling that information has a whole different meaning when you are on the ‘other side’. As a midwife, I had held many mummies’ hands as the Drs worked on their babies. I helped neonatal staff stabilise new infants. I performed neonatal life support at deliveries on struggling new lives. Being on the other side as a parent is tough. Right from their first breath, and even before birth, the Twins had relied on medical professionals to keep them alive. At that point Zachary needed them more than ever. I don’t think I’ve ever felt more helpless in my whole life. Or lonely.
They came after a while and explained how sick he was, but he was stable for now. I returned to him, to yet another different tube/wire and another different alarm to add to the ones that visited me in my dreams at night and continued to haunt me long after the twins were discharged home.
From then, I learned that I have to put the hands of my children in the care of others and pray that their knowledge and skill can keep them safe. Bringing him back from the brink of death, right through to when he has anaesthetics today. It’s the same thing. I hand him over and trust in them.
I’m scared of his sleepover ahead but I’m more scared of what they’ll find again as he sleeps. It’s taken me a while to know how to manage my own fear, but I know I feel it purely because I love him. I felt the fear sat by his incubator in NICU, as I sat there staring at him all day every day, from when the sun set until the sun came up. I felt the fear last MRI when he collapsed his lungs and was so poorly. I felt it to the extreme as The Team arrived.
I’ll feel it again this Wednesday. I’ll buy him new pyjamas and a present for him to open when he wakes up, as I always do. I’ll hand him over and trust in them again. We’ll then wait for the results to be given in outpatients a fortnight or so later and I will spend the day Wednesday praying I don’t get a visit ‘from the team’ before we go home. As nice as they are, I don’t really want to see them. ‘The team’ have spent far too much time at my sons’ bedsides over the last 5 years, thanks.
This practice, these events, will form a part of our life always. As common place as it is, it never feels normal. It’s always hard. However, I always come away from the children’s ward feeling lucky and humbled, whatever news has been delivered to us in the past. I often think that if anyone needs a reality check or to be hit with the perspective stick then they should visit a children’s ward. We are lucky that most of our challenges can be dealt with at home. I have friends whose children hardly ever get to go home. There are children who spend more time in hospital than their own houses. Children who see the ward they are on as Home. Children who get admitted yet never leave. Parents who leave without their children. Scan results far far worse than ours. Little superhero children fighting disease and illnesses and facing more than a grown man could ever cope with. Bravery in the hospital school room. Medical treatment alongside play.
Many people aren’t even aware this stuff goes on. Many people never have to face it. So many people don’t realise how lucky they are. I do. I know how lucky I am my twins survived their prematurity. I know how lucky I am that the Drs saved Zach that day, and all the other days like it. I know how lucky we are that we were able to resuscitate him on the landing at home when he was 8 months old when he had a respiratory arrest. Our challenges are significant. Their cerebral palsy and other diagnoses cause great difficulty and worry. Yet it still could be so much worse. I know how lucky I am to have The Team if I need them. I know how lucky we are to live in a country where such care is accessible in a service which is world renowned. How lucky am I, despite not wanting to leave him, that I can leave him wednesday in a clean, well equipped theatre with highly trained drs and nurses? How lucky am I that I leave him in safe hands? It’s when you see the hands on, day to day ‘shop floor’ of the NHS you truly realise its brilliance, its value, how precious it is. How that, or the normality of life should never be taken for granted.
I hope people really know how lucky they are, not to have to see the ‘shop floor’ like we, and so many other children and their families do day in, day out. I hope though they know if they need it it will be there for them. You probably can’t get a better or higher recommendation than to say you trust those people with the life of your most important thing in the whole world.