When life just carries on as normal

If you’re a parent, you’ll likely remember the feeling (how could you ever forget?) of emerging, blinking, into the light. Maybe from the hospital doorway; maybe your own front door. Maybe the very same day that precious bundle made its dramatic entry into the world; maybe one, two, or many, many days later. And… nobody notices. Everyone is rushing past on their way to work or wherever. Heads down. Headphones on. Grim faces. As they do every day. How can they? How can they just carry on as normal, as if nothing has happened. When the world is so changed? When for you, everything has changed.

If you’re not a parent, perhaps you felt it the morning after you first slept with the love of your life. Why can’t the world see I’m different? That nothing will ever be the same again.

The emotion is akin to that (and this is my poorest analogy, but I am an unashamed academic) I felt as a student when I’d been up all night writing the best essay of my life (only to have it shot down in a tutorial a few days later!). Tired but exhilarated. The world seems shifted: clearer, fresher, better resolved. In part delirium, in part clarity of thought, both probably born of exhaustion more than anything else.

It’s that feeling I get when I’ve been up all night saving a life.

His sats are dropping. I never believe the sats monitor but these are really dropping. He’s going blue. Literally choking on his own secretions. There’s no time to shout for help (and the last thing you want is to wake his sisters to see him like this; to see you, like this). There’s no time to call an ambulance, nothing like enough time. There’s no-one else. Just me, naked, a suction machine and a thin catheter. Catheter after catheter. Cursing the packets as I fumble them open. Cursing my shaking hands as I follow the tortuous path from his nose down towards his lungs. Holding my own breath until finally he can breathe again. Holding him close until his colour returns to normal. Kissing his forehead until, shivering with cold and fear, I creep back under the duvet, holding my sleeping husband for reassurance, holding the video-monitor next to my face.

I realise paramedics do this all the time. And nurses. Firefighters; lifeboatmen; midwives. I guess maybe they get used to it? Maybe it’s different when it’s your own child?

I am lucky. I have had to save his life maybe ten, maybe a dozen times only. Some mothers I know daren’t sleep unless there is an overnight carer with their child, maybe not even then. They lie with an oxygen bag and mask in their hands, ready to breathe for their child who may stop breathing several times a night.

And in the morning, I get up (or stay up). What else is there to do? There’s no time for self-indulgence, I’ve a family to run. Make a strong coffee, have a shower. Walk the girls to school. Hang out the washing. Busyness is good; I don’t want to sit and think.

I rarely tell anyone. “Did you sleep well dear?” “Not great…” How do you start a conversation with “I saved a life last night”?

And the feeling passes. Dwindles. Fades. Everything in my life returns to normal too. At least it has every time so far. Until the day I fail. One day I will fail and then nothing will ever be normal again.

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Torn

We are just back from weekend trip to Aberdeen. I say ‘we’. I mean my husband and I, and the two girls. Our first trip away without Benjamin.

I think we pulled off a pretty good impression of a ‘normal’ family on a ‘normal’ trip. Dare I say ‘minibreak’? A few bags slung into the boot along with sledges just on the off-chance – no squeezing in of feeding supplies, nebulisers, and suction catheters around the wheelchair. We stayed in a simple family hotel room – no phoning round for hours to find anywhere with a wheelchair accessible room that would sleep five (actually, I did phone around for hours before I remembered that, this time, Benjy wasn’t coming with us. Doh.).

But for me it was far from normal. My normal is with Benjy, and Benjy was away having his own holiday. We are fortunate to have access to a specialised, nurse-led, NHS children’s respite service, the kind of service that is under great threat in many parts of the country. We are grateful they can accommodate Benjamin for a weekend once a month – enough time for us to really make time for the girls. We are thankful that the staff have worked with us to get to know Benjamin well enough that we can entrust him to them.

But still, I’m torn. I don’t want to move too fast. We could have flown to New York for the weekend! But no, take it slow, baby steps, for all of us but mostly, if I’m honest, for me. So Aberdeen was a test run, somewhere we could get back from within a few hours at any time of the day or night. A test run for the logistics, yes, but also a test run for the emotions.

A six year old girl in snow-gear, arms outstretched, standing on a rock on a snowy hill

On top of the world (or a small hill in Aberdeenshire)

Sure, it was simpler and easier. Sure we could do things – like visit friends with inaccessible houses, like climb a snowy hill, like stay out later than usual – that we can’t do with Benjamin. The girls had a ball, singing songs in the car, playing in the snow, exploring the hotel, ransacking the snacks, a longer bath and a later bedtime. I can’t say we got any more sleep than we do at home – two excited girls and a late night in one room doesn’t compute. Add to that all the packing, and driving. It wasn’t exactly a rest, and it wasn’t a family holiday – how could it be, without Benjamin?

Sure, Benjy doesn’t seem to miss us. He enjoys the attention and the activities and the lovely lady nurses! But does he realise? Does he know that we’ve gone away without him? That we’re having family time without him, because it’s easier; because it’s too much trouble to take him with us? I wouldn’t dream of leaving his sisters with anyone else overnight at the age of four; how can I justify treating him differently? Especially when his needs are so great and his time with us may be short.

What if he gets sick and I’m not there to interpret how he’s feeling? What if the worst happens? Even if the worst doesn’t happen, we are all missing out on precious time with Benjamin. Will we regret these lost hours when there are no more hours with him to be had? Have I drunk in enough of him that I will remember his scent? The feel of his cheek? The little noises he makes when he senses I am near? Have I taken enough photos of his little freckled nose? Have I let his sisters have enough cuddles to last them a lifetime?

But his sisters can’t live their lives within an hour of the hospital. They can’t keep missing out just in case. They need to live now, experience the things their friends do now; they need Mummy and Daddy’s undivided attention, now. And I need time away from Benjamin to realise just how much I do miss him, to appreciate how much he means to me as a little boy, as my son, as my daughters’ sibling, rather than a patient and a full-time job.

So, hard though it is, it is good for us all to have this time apart. It wasn’t a family holiday and it wasn’t meant to be. All we can do is to make the most of our time away, to do things we can’t usually do, go places we can’t usually go, to spoil the girls and spoil each other, to try not to argue and try not to feel guilty if we do. And when we get back together, all we all want to do is hold Benjamin close, hug him tight, listen to his welcoming murmurs, kiss him gently, kiss him hard, hold him some more and appreciate being a family once again.

What a difference a drug makes

I’ve often joked that Benjamin is my easiest child. At least, alongside a five-year-old who will burst into tears if you suggest she watches CBeebies instead of Youtube (or, God forbid, actually turn the TV off), and a one-year-old who will literally climb the furniture to get at anything she shouldn’t have.

He doesn’t answer back. He doesn’t scribble in Sharpie all over the sofa, or helpfully make a trail of wood shavings from the guinea-pigs’ hutch to the kitchen. In fact a lot of the time, day or night, he’s barely awake…

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‘Just resting my eyes’

Maybe he exhausts himself working against his dystonic muscles? Maybe he’s out of sync, and waking lots during the night? Maybe he’s not really sleeping, he’s just pretending so he doesn’t have to do anything he doesn’t want to? He certainly seems to have a stubborn streak (no idea where he gets that from). No matter how much you try to wake him up, he just won’t have it. His heart rate drops and his temperature with it. He’ll sleep for 48 hours, wake up for an afternoon, then doze off again before bed-time. Keeping him warm with blankets, hot water bottles, body heat or whacking the heating up to max helps a little. Nothing seems to stir him.

Well, change is in the air – or in a little packet of pills. One simple drug has made him into a different boy! Based on some slightly anomalous blood results during previous hospital admissions (par for the course with Benjamin, who has never had a normal result in his life), a couple of months ago we were referred to yet another team (on top of neurology, respiratory, gastrointestinal, ENT, haematology, immunology, and the enigmatic ‘medics’): endocrine. The hormone doctors. They did several more blood tests and – surprise surprise – most of Benjamin’s results came back ‘borderline.’

One of the tests that came back borderline was a marker of the functioning of his thyroid gland. The thyroid produces hormones that, among other things, increase the metabolic rate, speed up the heart, increase body temperature, and regulate sleep.

So, just as an experiment, Benjamin has been prescribed a small daily dose of one of these hormones – thyroxine. And – once we’d explored with the gastro team how exactly to give the tablet through a feeding tube (guess what, they’ve never had a child like Benjamin needing this drug before… ) – the results have been astounding! His heart rate is no longer clinically low. His temperature is practically normal (as we come into winter that’s a big worry off my mind). And he is awake! He now maintains a relatively regular sleep cycle – he sleeps at night, has a nap around the middle of the day, and a lot of the rest of the time he is awake!

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‘Morning everyone!’

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‘Just because I’m awake doesn’t mean I have to be happy about it’

Crucially, being awake means Benjamin is aware of what is going on around him. He can observe, interact, and learn. His latest report from preschool reads: “What a difference in Benjamin this term! Benjamin … enjoys play experiences and interactions with his peers … has been showing clear signs of engaging more with those around him. He appears much more alert and aware.” And, as they continue, “When well and alert, Benjamin can explore cause and effect. There is more body language and less passive behaviour.” I’m sure we all often wish we had a few more hours in the day. Benjamin has literally gained a few more hours every day, thanks to one tiny tablet, and with pretty minimal side effects (just don’t mention the nappies).

And being more awake means he’s (ever so slightly) more mobile, more able to clear his secretions, more able to keep his feed moving down in the right direction. This is one of a number of small changes – regular chest physio, prophylatic antibiotics, the switch to a G-J tube which has dramatically reduced his reflux and consequent aspiration of feed into his lungs – which have helped keep him out of hospital (touch wood) over the summer. Now we just have to see if they will be able to hold firm against winter’s onslaught of bugs (touch more wood… can I get some more wood from somewhere?).

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Thank goodness for Shane the log-man

He’s still my cuddly, snuggly boy, but now we also get to see his beautiful brown eyes! We often even get a wave and a smile. Yes, he’s still tired and grumpy by the end of the day (show me a preschooler that isn’t. Or preferably a five-year-old, an eighteen-month-old and a husband). The drug deemed ‘worth a try’ has turned out to be the drug that’s making all the difference, not just to Benjamin’s health, but to his development and enjoyment of life.

 

Benjamin doesn’t tick boxes

An open letter to the Head of Education at East Lothian Council

Dear Ms Robertson,

Not having a tracheostomy is a good thing, isn’t it? Not being on TPN, not needing daily IVs, that’s good, isn’t it? Not if it means you can’t access the support you need.

I am sending you an open letter, because your response to my previous, urgent email about my son’s education was met – more than a week later – with a dismissive, incorrectly addressed, response from a ‘service administrator’ advising that it had been forwarded to ‘appropriate personnel who will respond in due course.’

If this administrator had actually read my letter, she would have seen that I am not ‘Mr Davey’ but Dr Davey, Benjamin’s mother (even ‘Mrs’ would have done), and that this matter requires a response not ‘in due course’ but urgently, and not by ‘appropriate personnel’ but by someone at the very highest level who has the ability and resources to make things happen, and make things happen fast.

This is Benjamin. Benjamin is undiagnosed. He has multiple, complex, interrelating conditions affecting many organs and systems of his body, but we don’t know why. When something is wrong, it is difficult to tell which part went wrong first. Chest or stomach? Breathing issues or muscle tone or a seizure?

Benjamin is intractable. Benjamin smiles when he is happy or with people that he loves. Benjamin also smiles when he is in pain. Benjamin tenses up when he is trying to reach for something, and also when he is trying to pull away, and when he is distressed.

When Benjamin is well, he’s very well. On a good day he only needs his regular medications, four times a day, his inhaler and a saline nebuliser once a day, chest physio and suctioning twice a day, a few checks of his gastrostomy and his temperature and you’re done! When he’s poorly, he can be very poorly. He may, within a couple of hours, become so dehydrated he needs IV fluids. He may produce so many thick secretions that he cannot breathe. He may have a tonic-clonic seizure that is resistant to rescue medication and lasts up to four hours. His temperature may drop so low it cannot be recorded with a regular thermometer. His heart rate can drop to 30 or rise to 180 beats per minute. His muscles can become so tense it is impossible to bend him into a sitting position. He can vomit fluorescent green slime out of his nose (Britain’s Got Talent, are you reading?). Benjamin can go downhill very rapidly and recover almost equally rapidly. Sometimes it is impossible to tell whether he is deteriorating or improving. Benjamin needs someone on hand, 24/7, who is able to respond to all these medical eventualities.

Benjamin doesn’t tick boxes. Benjamin doesn’t meet criteria. Especially when we don’t know what criteria he is being measured against. Especially when the ‘professional’ opinion is that he doesn’t even justify being tested against the criteria. Benjamin confuses panels and confounds ‘decision making tools.’

Benjamin, like all three year olds in Scotland, is entitled to 600 hours of funded early learning and childcare per year. Benjamin has a place at a fantastic special needs nursery, attached to the special needs school provision where he will hopefully eventually receive full-time education.

Benjamin loves nursery. He loves his teachers. He loves painting and baking, soft play and ‘body awareness’. He loves the sensory area and he loves when he gets a foot massage.

I love Benjamin’s nursery. But I don’t want to be there the entire time that he is there. Like other mums of three year olds in Scotland, I am entitled to 600 hours early learning and childcare for Benjamin per year to allow me to care for and spend time with my other children, to catch up on paperwork (oh, the paperwork), to catch up on laundry (oh, the laundry), to have a coffee, go for a pee, read a magazine, get my haircut. God forbid, I could even do my job.

But, since Benjamin started his three year provision in early January, I have had to accompany him to nursery because there is no-one there who can meet his medical needs. This was intended to be a temporary arrangement until either his nursery staff could be trained to meet his needs (voluntarily, because they are wonderful, caring people who will go beyond the requirements of their role as long as it is safe to do so), or until provision could be put in place for a medical professional to be with him at nursery. This would be a ‘reasonable adjustment’ as required under the Equalities Act to ensure that Benjamin can safely attend the education to which he is entitled.

As it transpires, Benjamin is too complex to be cared for by nursery staff. They are, after all, teachers, nursery nurses and classroom assistants. They are not medical professionals. (I am not a medical professional but, since having Benjamin, I might as well be). They cannot be expected to, should not be expected to, take decisions about Benjamin’s highly complex, variable, unpredictable and rapidly-changing health needs.

Benjamin’s teachers can be trained to do chest physio but not how to tell when chest physio might make his wheezing worse.

Benjamin’s teachers can be trained how to suction him but not how to tell when he needs suction or when it would cause too much trauma.

Benjamin’s teachers can be trained to aspirate his gastrostomy but not when that is necessary, how to evaluate the contents of his stomach, when to discard them, when to stop his feed, when to switch him to a different feed regime, when to worry, or when to take him to hospital.

Benjamin’s teachers can be trained to administer his feeds but not to evaluate what rate is appropriate for his stomach at any given time.

Benjamin’s teachers can be trained to clean up if he vomits but not how to tell if some vomit has got into his lungs, if he is getting dangerously dehydrated, whether he needs to go home on dioralyte or go immediately onto IV fluids.

Benjamin’s teachers can be trained to administer his medications but not to determine when he needs a higher dose than usual.

If Benjamin’s teachers make the wrong decision, because they are not medical professionals, he could end up in A&E wasting everyone’s time, or he could end up gravely ill. It wouldn’t be their fault. It shouldn’t be their responsibility.

And yet, because Benjamin doesn’t have a tracheostomy, because he is not on a ventilator, or on TPN or regular IVs, nobody will assess him for the Lothian Exceptional Needs Service for Children with Exceptional Health Care Needs (LENS) scheme, despite that he fulfils many of its ‘issues relating to need’ including needing ‘sustained medical support … seven days per week,’ requiring ‘professional trained intervention on a regular basis or in response to an acute incident in order to prevent acute hospital admissions,’ demanding ‘a degree of complex problem solving, and revision of the child’s care plan, on an hour by hour or day by day basis,’ and an inability or lack of competence of carers to meet these needs.

Because no-one will even bother to assess Benjamin for the LENS scheme, he has been downgraded to the frankly mythical HESS (Healthcare and Education Support Service). Because no-one will supply us with a copy of the criteria for referral to HESS, we do not know what boxes he needs to tick. Because the member of staff responsible for making the referral has been slowly drip-feeding us the information we need to supply and the evidence that needs to be provided, rather than giving us a clear outline of the application requirements from the start, it has taken far longer than it should have to put all that evidence together, extending the process well beyond the end of last term and into the next. Because parents apparently have no input into this information, only ‘professionals,’ there is no one to complete the documentation: I, his parent, am the one taking care of him at nursery because there is no professional there trained to do that (Anyone else thinking Catch 22 here…?). Because East Lothian has never even signed up to the HESS scheme, there is no guarantee that Benjamin will get the support he needs through it, and in the meantime we are left waiting, hanging, clinging to the concept of a ‘decision making tool’ that we have never seen and know nothing about. From Christmas to Easter, and now into the summer term…

I know this isn’t your fault, Ms Robertson. If anything, it’s mine: fancy agreeing to go to nursery with Benjamin as a temporary measure until something more permanent was organised? How gullible was that? Of course, that removes any incentive for anything permanent to be organised! I know this isn’t your fault, Ms Robertson, but it is your responsibility, so that’s why I’m writing to you (again) now. I’m no longer prepared to give up my time and my family’s time to provide something that should be provided to Benjamin as a right. The buck stops with you and it stops now.

There are many possible solutions. You could answer – and even fast-track – my request for Benjamin to receive a Coordinated Support Plan. You could provide all special school provisions in East Lothian with a full-time school nurse. You could support Benjamin’s immediate referral to the LENS scheme. He cannot be the only child in the county who needs this kind of support? Even if he is the only one without a tracheostomy…

I don’t want to be one of those mothers. The difficult ones. The ones who kick up a fuss. The ones who go to their MP and MSP and write viral posts on Facebook and go to the press. I am nervous. I wonder, is it too early to protest? The HESS application is, after all, still ongoing. The school staff say they are drawing up a ‘timeline’. The nice lady at the council says she has sent some emails. But how long do we have to wait before we start working together on ‘Plan B’? Do I and the nursery actually have to call your bluff, refuse to provide essential medical support for Benjamin, in order for someone to take us seriously? Does it have to wait until my family is at crisis point?

I don’t want to be one of those mothers, but believe me, I will. If Benjamin does not tick your boxes, your boxes are the wrong shape. If Benjamin doesn’t meet your criteria, you need to rethink the criteria. If Benjamin doesn’t fit your ‘decision making tools’ then those tools are not fit for purpose. Maybe together we can make some better tools?

Yours,

Benjamin’s mum

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Complexity

‘Has he recently come into contact with a scorpion?’ the consultant asked. Now, I know Dunbar seems like the back of beyond to inhabitants of the capital but really?

Apparently the only thing anyone remembers from medical school (I really hope it’s not the only thing) is the acronym I GET SMASHED, for the eleven causes of acute pancreatitis. (Just in case any readers have an upcoming medical exam they are : Idiopathic, Gallstones, Ethanol, Trauma, Steroids, Mumps, Autoimmune, Scorpion stings, Hyperlipidaemia, ERCP, and Drugs). And of course Benjamin being Benjamin, he comes under the first, idiopathic, i.e. we have no idea why this happened.

I woke at five in the morning to find him literally drowning in milk. His overnight feed, which is pumped slowly into his stomach had, instead of moving down into the intestine, passed up his oesophagus and then down into his lungs. Ambulance duly called, he was blue-lighted to A&E with Daddy while I stayed behind to clear up the mess and look after the girls.

After forty-eight hours of repeatedly vomiting large amounts of dark green bile, x-rays, ultrasound scans, blood tests, urine tests, stool samples, a lumbar puncture and a midnight laparoscopy under general anaesthetic, he was tentatively diagnosed with pancreatitis. Atypical pancreatitis (of course) because his blood showed none of the usual markers for it.

By this stage Benjamin was in intensive care, on a ventilator, and heavily sedated. For a few hours I wondered, How on earth did we get to this? But ICU quickly became our new normal, not somewhere to be feared but a place of safety, where Benjamin was receiving the best possible care and round-the-clock attention. We got into a routine too, Daddy staying overnight at the hospital and commuting to work during the day, me doing the day shift at the hospital and palming Caitlin off on anyone who would have her in-between feeds. Jackie and Granny held the fort at home.

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It’s not so bad, this ICU business

Meanwhile, behind the scenes, the doctors tried to fathom what was going on. Benjamin has such a complex of symptoms, even when he’s well, that it’s often hard to work out where one problem starts and another begins. Did he vomit some milk and then aspirate it which led to a chest infection? Or did he have a chest infection from which he swallowed some phlegm that made him vomit? Is his high muscle tone causing his chest to tighten and his breathing to become laboured? Or is he having trouble breathing which is stressing him out and making his muscle tone high? We’re walking a tightrope, balancing the management of all his symptoms with a cocktail of medications. One bug in the system – even something as simple as him gaining a little weight – and the whole delicate balance can come crashing down.

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Enjoying Mummy-cuddles back on the ward

The most likely (albeit still unlikely) cause for Benjamin’s pancreatitis was a reaction to his epilepsy drugs. But he’s already on one of the best drugs with the fewest side effects; there’s little else we can switch to. We can’t stop his epilepsy medications and risk daily terrifying, dangerous and debilitating seizures. Our only choice is to continue the drugs and watch, and wait. And the only treatment for acute pancreatitis is also to keep him comfortable, watch and wait…

And ten days later he was home, in a car full of balloons. We have been so fortunate with Benjamin. Compared with the dire predictions made before his birth, he has been so healthy and so strong: this is only our third emergency in as many years. With each emergency, with each long wait for the ambulance, each tense hour spent in resus, each extra day in ICU, each year that he lives on borrowed time, I become more scared that this time he won’t make it. But with each, Benjamin shows us just what a fighter he is. The moment he begins to turn the corner, he turns it fast. His condition might be too complex for the doctors to understand, but so far our little boy has beaten everything it can throw at him.

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I’m pretending that Mini Mouse balloon is nothing to do with me