The morning of my 4oth birthday was not an auspicious start. If I were superstitious I could look back and say the portents for upheaval were all there, the stars were aligning for some massive disruption – either that, or some sentient being has a massive pokey stick and is busy prodding us. 0615 and Belle wakes us by looking green around the gills and then hurling everywhere. Ten minutes later Calvin arrives with a colostomy bag that has exploded liquid stench all over him and his bedding. Breakfast in bed – pah! “Happy Birthday Darling” – right! We wordlessly split ourselves up between clearing up the hazardous waste, only to powerlessly watch the Lord of our Manor, our cat Skittles , deciding, of all the mornings he could choose to, that he prefers to wee in my bath. I must clarify here that I wasn’t actually IN the bath, that would have tipped me over, but nonetheless it is not designed to be a place for cat pee and his subsequent ablutions. I had absolutely zero desire to clear that up either. The cat was most definitely in the dog house. It has comedic value somewhere though; maybe a script I shall tuck away for when I can emerge from behind the door marked BUMS AND SICK.
I did have a glorious, silly, convivial Mad Hatter’s T-Party that evening though, celebrating with my gem of a twin brother and oodles of truly fabulous people, who keep on being friends with me, even though my topic of conversation has been somewhat restricted to kids’ ill health in recent years. I was amazed I actually made it to the celebrations because when I usually have something glorious planned ( tickets booked , planes to catch etc.) fate intervenes and I end up cancelling because I’m sat sighing in the children’s ward and busy trying not to grind my teeth when they ask me the kids’ medical history for the UMPTEENTH TIME, even though they have a library of notes stacked in front of them.
For my readers who keep messaging me asking why I’m not writing – this is a summary/ catch up/ snooze off – you choose: Calvin had a chunk of white mucus stuck inside his bum (a painful by-product of colostomies where the lining sheds and builds up inside the rectum) and because his bum doesn’t actually work and he was standing on his head on the sofa again to relieve the pressure, he had that surgically removed. His abdominal pain and stoma prolapsing continued apace and he was utterly cheesed off because running around would cause his bowel to push out and stay there for an uncomfortable length of time. Lying down in the school library, waiting for the pain to stop and for your body to get its sh*t together, was getting somewhat tedious for him. The tears, the dark rings under his eyes, the poor sleep, the reflux, nausea from food and the frustration were all, unsurprisingly, back. Yet he soldiered on with very little complaint. His surgeon at Great Ormond Street Hospital decided the time had come for another stoma revision. This would be third time in two years he was going to make a new colostomy for Calvin and cut away the loose bowel. Oh, I’d forgotten that Calvin had also developed nasty granulomas (horrid, horrid, horrid bobbles of bowel overgrowth outside the stoma) which weren’t responding to any treatment and needed surgically removing. It would be an eight week wait for the surgical slot on the 20th August.
At the same time we managed to get rid of Belle’s NG tube in July as we’d gradually reintroduced food and she seemed to be tolerating it pretty well. We did manage a holiday in a camper van to the glorious Pembrokeshire coast. The previous renters had kindly decided not to empty out the grey water tanks so we spent half of the week clearing it out, gasping for breath at night because the eau d’ oeuf had pervaded every nook and cranny and swiftly shattered my little house on wheels, Fisher Price toy campervan dream into a zillion pieces. The egg smell was so rotten at our end that we chose to be lashed with stinging rain at 3 a.m. as we both elbowed each other and had our heads hanging out of the tiny window, gulping in fresh air. Industrial strength drain cleaner to sort the plumbing was another ominous sign of more trouble on the horizon – keep reading, it will all make sense.
No 1. child, Belle, also stopped eating for a few days after that holiday and I suddenly realised the daily bowel prep she endures to force her peristalysis was becoming less effective and she was looking tired again. Back to fortnightly appointments at GOSH again, we doubled then trebled her drugs and somehow she kept going in spite of how vile it made her feel.
No. 2 child needed our care though when he spent a week on the surgical ward recovering from his op. Four year old No. 3 child, Taz – remember, Tasmanian Devil? – was also on strike because he decided I’d abandoned him one time too many as I cared for his siblings in various hospitals. He was furious with us and displayed it every way he could, especially at bed time when we were already on our knees. He started school and decided it wasn’t really for him; he went in glowering and came out looking like thunder, saying he wanted to be an adult so he could make his own decisions and choose what he wanted to play with and that he didn’t want to sit and listen. Go figure! Yet again No.3 has to wait in line for our attention and in spite of pushing me to my limits I actually just want to scoop him up, hold him tight and tell him to hang in there.
Calvin’s granulomas returned en masse a week later and the pain was on the up. Somehow we got him back to school part time, yet most of that was spent out of the classroom with his teaching assistant because he didn’t want to disturb the other kids and didn’t want to cry out, scrunched up with pain , in front of them. For the next four weeks his colostomy misbehaved, either producing absolutely zero for days or foul smelling diarrhoea. Neither is a good sign. We also saw a dermatologist because his skin was in such a desperate state around the stoma who has prescribed some wonderful solutions that have actually finally worked (QVee wash for skincare and synagel for the granulomas for those fellow ostomates who are interested). He then sat (well , stood for most of it actually) his 11+ exam for the local grammar schools in the midst of poor sleep and chronic pain.
He was swiftly losing weight so his consultants at GOSH decided to put him back on immunosuppressants and the elemental feed that we’d worked so hard to get him off. The nasal gastric tube went down without any flinching and he accepted the feed because he said he just wanted the pain to stop. That took courage and maturity. A week later I took him into our local hospital where he was admitted with an impacted bowel, and there we still are, eleven days later.
Meanwhile Belle was becoming more and more exhausted. We removed gluten and refined sugars from her diet then she was put on the FODMAP diet, which did help reduce bloating but nothing else. She would collapse at the end of each school day into a sorry little heap and all the alarm bells were clanging in my head about her. Her abdomen continued to hurt and she was becoming nauseous, yet barely complained. She kept going but last weekend, whilst Calvin was in hospital, we noticed she’d lost her sparkle and was just hanging on with her fingertips, enduring the misery of a body that refused to work properly. In spite of all that, she was still organising a big school fundraiser for the GOSH Bake It Better campaign this week . She started being sick this week and was swiftly admitted to the same hospital as Calvin. That’s a first for us. She too is impacted, hence the advent of Klean Prep aka drain cleaner (I told you the warning signs were there earlier this Summer) night after night. Her paediatrician hopes we’ve caught it before her body spirals completely out of control like it did a year ago. Her NG tube is back in and she made an incredibly mature decision to stop eating and return to the feed she was on before. This has become all about her quality of life and she will probably end up with a less visible , more permanent tube into her abdomen.
Calvin may or may not need the same but, for the moment, they just want to stabilise him. PEG feeding him could be problematic because he gets infections and granulomas so easily so we’ve decided to take it one month at a time and just get him established on his feed with a working bowel and back in school.
In spite of a truly crappy week for my little family, we did have some wonderful news when we heard that Calvin passed his exam and will be going to his sister’s outstanding school. I can’t begin to express the pride we feel; not because he’s smart (that’s just lucky) but because against all the odds he overcame huge physical and emotional obstacles to achieve that.
Surprising though this is, we are actually coping. I’ve had some epiphanies in the last few months and have reached these conclusions: to value my friendships, lose my pride and take strength only from those who are supportive and offer emotional depth and truth (a good friend categorises people as either drains – there I go again – or radiators, which I thought was wonderful) and who don’t shy away from us or the situation we find ourselves in; to stop hankering after a career I can’t have back and to accept this illness is here to stay, this is our normal and that caring for my children is a valuable, important role and one I should be really proud of (the therapist has done a good job there!); and, this is the simplest but I do believe life changing, that if I take this in my stride then so too will the children and they can live their lives to their fullest. I honestly think those building blocks are as simple as it sounds. I can’t promise a swift update but I will post again when I can.
Dear Calvin and Belle,
It’s been 160 days since I had the mental strength to write my blog. It just hurt too damn much to try to express what I feel about your illness. Today I’m penning this one for you two – my sweet, sweet children. I was woken by the mauve dawn creeping through the slit in my curtains when the air has a heavenly stillness, punctuated only by perfect birdsong. Before I wake you both from your exhausted sleep and pick you up and help you face your day, I felt today was the day when I could let go of some of the pain and hurt and sadness I bear for you. I don’t much like my Atlas pose with all that weight on my back as I try to hold you up, so I’m going to start changing that. Today I am going to write as I truly feel, without crumpling like a flimsy paper bag, underfoot.
For the last year we have been through a hell of a journey; when you stopped eating, Calvin, and you were tube fed for eight months whilst your bowel was resting. Only, then, for you, Belle, to follow suit. Writing eight months seems like a blink of an eye, yet I know, Calvin, it was arduous and long. As you were finally finding your mojo again, your big sister, Belle, had a violent, unexpected decline with her health. The fact she shares some of your genetic propensity for bowel difficulties was no surprise to us; the ferocity of her illness, was a shock. It still is.
And today? Well, thirteen year old Belle is slowly, slowly improving and has gained most of the many precious kilos she lost. Her tube feeding persists but for the last month, fifty per cent of her calorie intake is normal, everyday food (bar the allergies, of course!). I know we’re playing tricks with your bowel Belle, and hoodwinking it with very strong daily stimulants into thinking it runs like clockwork. I know it hurts and feels like your stomach is going to explode, I know your body aches all day, I know what a physical effort part-time school is and I know you crave normal and no more doctors and appointments and you just want the sweating, the pain and nightmares in the small hours to stop. BUT, this is still better than six months in and out of hospital and surely better than being fed through your heart? Better than collapsing on the hospital floor and begging for a wheelchair because you couldn’t walk from one end of the ward to the other. Better than not remembering the first few months of this year. Better than facing the wall and crying silently into your pillow so you didn’t disturb the other children. Better than feeling faint and permanently nauseous. Better than having to sleep on an HDU bed with an air mattress on top and a soft mattress your Grandmother bought you in desperation when your pelvis and backbone were sticking like pins into you. Better than recovering from the five anaesthetics you had where your heart rate dropped to dangerous levels because your organs were so compromised by your starved body. Better than having tubes shoved in and pulled out. Better than being prodded and poked with no choice but to comply, as your doctors tried so hard to figure out why you had crashed so spectacularly. I know the status quo isn’t great. Far from normal. But so much better.
And You Calvin – tomorrow we see your colorectal surgeon and your gastroenterologist in a long awaited joint clinic at Great Ormond Street Hospital in London. In fact, it’s a family outing for genetic testing on all five of us and abdominal ultrasounds and appointments for Belle too. Woo-hoo! I’ve lost count of the appointments we have had since you were four years old. I’ve lost count of the number of operations and investigative procedures you have undergone. I’ve lost count of the number of times you beg me to stop the pain. You darling boy. Tomorrow I will be unashamedly begging them to intervene and do something, pretty pronto, about your excruciating rectal pain that has returned once more because the mucus is stuck inside. I want them to fix an awkward, bloody minded stoma too, that has granulomas sprouting on it and bleeding like juicy blueberries and wants to prolapse the moment you run around like any nine year old boy should.
You have made such wonderful progress this year, physically and emotionally, so just let us help you through this patch of nettles. Don’t let this flare-up drag you back to that unhappy place you inhabited after your colostomy was formed nearly two years ago. After a year of not letting me hold you and touch you and reassure you , thank you for trusting me and letting me be your mum again. Don’t let that anger eat away at you. Find another outlet; pick up your drumsticks, yell into the wild wind on top of the hills, lean on me and your Dad, squeeze my hand as hard as you can when you want to punch your abdomen, continue to hold your head up high and meet life head on. We’ll be there to catch you when you fall. We’ll be there when you wake up from more surgery. We’ll always be there to fight for you and to teach you to live your life to the full. We’ll always just be there. For all three of you.
My bright, gentle, compassionate, brave, thoughtful, musical girl – I’m sorry you had to go through such indignities and discomfort at such a tender age. I’m sorry that other consultant thought you had an eating disorder. I’m so, so sorry I yelled at you through my frantic tears when you couldn’t get up off the floor and open your eyes. I’m sorry your young body has let you down at times. I’m sorry you had to miss out on so much. I’m sorry puberty has triggered such an extreme response. I’m sorry that inserting the Nasal Jejunum tube hurt so much – every, single, time. I’m sorry you longed for food and couldn’t eat it. I’m sorry you walked into an orchestral practise at the weekend and a hundred heads swivelled and stared at the tube. For what it’s worth, I stopped seeing it a long time ago. I just see you. I’m so ,very , very sorry that you were frightened and felt so ill. I’m sorry that you can’t get out of bed some mornings and that trying to express yourself and your frustration can be such an almighty battle.
And you – my quirky, quick witted, interested, warm hearted, nature-loving, blue eyed boy. I admire your resilience more than you know. I’m so sorry most days throw a challenge at you. I’m so sorry you feel such agonising frustration with your body but it still is a wonderful, gifted machine in a myriad of ways. I’m so sorry you didn’t win the recognition you deserved for the effort you put in just turning up to football matches and managing to stay on the pitch – I know that hurt, it hurt me too, and I saw you fight back the tears when other boys proudly showed their medals for being the fastest or the best. No-one else knows – but we do. We truly do and we know how you pick yourself up time and time again and keep going. I’m sorry you only just told me the white board in school was blurred and you didn’t tell anyone because you said “people might think I was making a fuss – again”. I’m so sorry you’ve missed so much school. I’m so sorry I can’t take the pain away. I’m sorry the sight of the NHS sign makes you panic. I’m sorry your slumber isn’t always peaceful. I’m sorry you loathe your colostomy so much.
For all three of you, I’m so sorry it’s a combination of our genes that have given you this but we’ve also given you all so much more besides. I’m not always a shining example of how to cope and you see my frailties too. You see my worry and my concern yet I hope you both know, everything your Dad and I do for you, is motivated by unconditional, devoted, uncomplicated love. There’s beauty and veracity in its simplicity and when you are older I want you to remember that.
This is our normal. We can’t turn the clock back. We are all going to have to accept that. It’s not going away and it will probably wax and wane. Countless children in this country have unblemished childhoods, but many don’t . Every time we are in the paediatric hospitals we witness that. You are blessed. We are very, very lucky. It is undeniably tough but look how we have one another and have so many riches in our lives. It’s hard to remember that sometimes, but we all must try. I’m not trying to offer you a salve, I’m just speaking the plain truth.
You would think my strongest memories would be the first scan of matchstick arms and legs and round heads, your tricky births, your first steps, the first time you called for me from your cot, your first day at school, the first time I watched you pick yourselves up after being disappointed. They are all there but my most powerful memories are of you both learning to eat food again . Calvin, I will never forget the way you licked your plate clean with such delight whilst your Dad and I watched gleefully through the crack in the door. And Belle, when we came home from GOSH on the train and you absent mindedly ate some rice cakes with your nose in a book. The sob in my throat caught me out and I sat watching you, tears coursing down my cheeks. I tried not to embarrass you but only had a sanitary towel in my bag to wipe them up. It made us both laugh as you tried to disown me.
I couldn’t cry whilst you were both in your hospital beds. Adrenalin keeps you going, month after month. I feel like I’m stuffing all those feelings into a massive, red balloon, which strains at bursting point. Every now and again I get caught out by a kind comment from a friend, a piece of music, the afternoon play on Radio 4, a book where a passage moves me, waking up from my vivid dreams – then, a little bit of whatever is inside that balloon escapes. The feelings are so enormous I think that if I let that balloon go, it will pop and our lives will burst wide open. It hurts to write this down. It hurts to show your feelings. It feels safe to show that with some people and not with others. I know this because I feel it just like you. I want to reassure you that it’s perfectly ok to have all those thoughts crowding in, to feel far away from other people and their lives, to feel like normality is slipping away, to feel angry, confused and resentful and scared of what may be coming, or not.
As your parents we may not always be the right people for you to turn to, but there are always others in your lives who you will be able to trust and lean on. When friends need you in the future, repay that favour. It takes a brave soul to listen and to not trivialise or shy away from difficult subjects. Hold on tight to them and take care of those friendships for they are very, very special. In equal measure you will need others who make you laugh, who inspire,who challenge you, and who, one day, may turn to you.
I believe that children like you, who grow up too soon because of having to face adversity at a young age, will be resilient, empathetic, kind, thoughtful, tolerant adults. I think that’s a gift that you have earned from this experience and part of learning to be human. See, it’s not all bad! Go and live your lives with every ounce of energy you have. Find the joy and the pleasures. And don’t be scared. You have more strength than you yet realise, whether we are walking with you or not.
Here endeth my lesson children.
Forgive me Reader. It’s been more than a month since my last post. After seventeen days in our local hospital desperately waiting for a bed to become free at Great Ormond Street Hospital, we finally made it to her specialists in London in January after Belle was transferred by ambulance. I’ve never, ever been so relieved to be here. Except, nothing is ever straightforward. We are a long, arduous, frustrating way from an end in sight. We would love to have concrete answers as to why 12 year old Belle has become acutely ill. Her gastroenterology team has called her a conundrum and keep patiently plugging away at eliminating rare diseases and trying to treat and diagnose her. We’re in our fifth week here and each day seems to merge whilst her doctors whittle down the reasons for relentless vomiting and weight loss and non functioning bowel during the last four months.
The last month has tested my husband and I to our limits as we juggle between his work, the needs of our two sons, the logistics of half our family living three hours from home and the endless, gnawing worry about Belle. It’s a battle of wills between positivity and despair as each day seems to bring new, complex challenges. I’ve tried to write this post so many times and have either been too exhausted to think straight or just felt so gloomy I didn’t want to bore the pants off all my readers. How does one begin to describe watching her in pain, becoming withdrawn, the sleepless nights by her bed, the complexity of malnutrition, the sadness we feel seeing her just existing in a hospital bed and the overwhelming frustration of seeing her deteriorate. I’m shocked when I see her thin limbs and ribs and pelvis protruding as I gently bathe her. I think about children and adults with anorexia and pity what it does to their ravaged bodies. I watch her heart rate and blood pressure fluctuate and wonder what is behind it all. Her bladder is playing tricks and not functioning as it should. She seems to dehydrate all too easily. Her muscles have become so weak we opt for a wheelchair more often than not if she leaves the ward to go to another part of the hospital. The nausea continues unabated, worryingly her pancreas shows inflammation from daily blood tests yet the MRI remains inconclusive, her gut has pretty much stopped working as the doctors can’t really hear any gurgling sounds and she struggles with any feed going into her intestine. I could go on but I find that list pretty overwhelming. It makes me think so hard about what other children with rare bowel diseases go through. It’s beyond comprehension at times.
Inch by baby inch she slowly edges forward as the physiotherapists come and move her awkward limbs to jolt the muscle memory into remembering that four months ago she was running 5k easily and skipping around the hockey pitch. Bit by bit one of the hospital psychologists and a nurse who specialises in adolescent health quietly reassure her and help her to cope with the overwhelming emotional turbulence and isolation that dealing with a serious, unknown illness has brought. Day by day the nurses and doctors are monitoring everything that goes into her intestine and monitoring bloods and weight very , very carefully now she is being fed through her heart with a life saving treatment called total parenteral nutrition or TPN. It’s not for the faint hearted and not without risk but was an absolute necessity when she arrived here more than four weeks ago. She weighed 42 kilos at the weekend and has suffered a 20% loss of body weight since this all began. Millilitre by millilitre they drip different feeds or sometimes just water through her small bowel just to see if she can cope with the debilitating nausea and abdominal pain. This week is all about testing to see if her pancreatic enzymes keep increasing (not good) which may reveal an underlying pathology (very good).
The light and shade of my writing normally means I end up writing flippantly about something, but I’m just not in the mood. Once I have her home I shall tell you about the Chair Wars I had with a hideous neighbour I was forced to sleep within an inch of in an open bay or the dishy anaesthetist who flirted outrageously at 2am whilst he spent an hour trying to get a cannula in Belle’s unforgiving, thrombosed veins or Pizza Gate when a parent rang the Police to say someone had snaffled his take away pepperami stodge from the communal fridge. I’m not kidding. Those petty hospital tales are for another day but actually kept me going, in a warped institutionalised way.
Thoughtful phone calls, cards, parcels and texts come thick and fast every day from a variety of people in our lives and every single one is hugely appreciated . It may seem like nothing but they all leave an indelible imprint, and never, ever forgotten. Kindness, prayers, support and visits, from those who can, warm us both up and bring some of the outside world in. Brian and I have no idea what is coming so we just take one day at a time and keep looking for the little signs that all will be well again. I shall post once more when we have some answers and some meaty progress and we can toast her coming home.
My last thought and prayers are with an unforgettable mum (and there are armies of them by the way) I have made friends with on one of the wards. Tania is an inspiration to watch as she loves her terminally ill, severely disabled child with such aching tenderness. She fights with her every fibre and motherly instinct for the breath in her daughter’s body and wills her to keep going. I watched her rock , hold, play, laugh and sing lullabies to her child and it moved me in a way that I shall never, ever forget. Keep fighting for her Tania. Keep fighting.
My four-year old, Taz, would give a big thumbs up to this post’s sentiments because I’m going to talk about super heroes. His big sister, 12-year-old Belle, has been a superstar this week as she lies in her hospital bed with only the odd murmur of complaint while we desperately wait for a bed at Great Ormond Street and for someone to figure out what on earth is wrong.
I believe we’re on Day 11 since she was admitted to our local hospital with relentless vomiting. Admittedly it’s not the finest of super hero characteristics but her resilience and lack of self-pity shine through. That little Mystery Girl is truly foxing the doctors. They thought they had her bowel sussed but it seems after her last admission to Great Ormond Street, just before Christmas, she was only stable for about a week. Those clever doctors know they need to get her back in their sights so they can figure out why her body rejects anything orally. The invisible illness seems to have returned once again. Every day I’ve watched her try so hard to nibble on a few biscuits or some cereal with orange juice (no dairy I’m afraid and she loathes all the allergy alternatives) only for her head to be curled over those very special recycled cardboard bowls half an hour later (nearly wrote bowels there – see, the blasted thing is always on my mind) as her body is racked with discomfort.
Her super powers were tested yesterday because she’s so weak and fatigued as her body is in starvation mode, in spite of being on maximum I/V fluids. It’s painful to see her thin knees poking up through the blanket and to see the effort involved just getting up for the bathroom. She’s got a new local paediatrician who has been trying so hard to sort her out and has been dipping into his arsenal of anti nausea I/V drugs but, alas, to no avail. Whilst on the ward I also bumped into the previous consultant who during a November admission declared Belle had an eating disorder and dismissed all other evidence from the experts. I blasted her with the family coined phrase “Bad Eyes” , where I hope my Paddington Bear stare lasered right through her arrogance and incompetence. Taz – if you ever read this when you’re older, she’s most definitely on the baddie side.
Belle looked tiny in her bed yesterday as she curled up with her big eyes and her hollow cheeks, silent tears squeezing from the corners of her eyes as she fiercely blinked them away. Her paediatrician sat and gently explained he couldn’t allow her to drop any more weight so she needed to let them put an NJ tube down through her nose, past her stomach and into her small intestine so they can give her some elemental nutrition. After he left the room her tears came flooding out, soaking the pillow, and in a very small voice she repeatedly asked me to take her home. I felt sad as I climbed in next to her and held her close. In those moments I remembered after she was born and we took her home ; she used to lie curled like a snail’s perfect shell on her dad’s chest, skin to skin, and his deep breathing would synchronise and slip her back into the land of slumber. I wished he was there yesterday because without hesitation he’d still wrap his strong forearms around her and rock her and comfort her. Give me a moment, that picture makes me have a lump in my throat.
When the gorgeous registrar (of the seriously drop dead type – he’d definitely be drawn in Marvel Comics as slightly geeky, gentle and confident with kind eyes and finely chiselled jaw. Got to get my kicks where I can! Actually I thought he was just wonderful with Belle and that’s really why I looked at him with respect , erm,….. OK, and a little bit of eye candy admiration) came in, she closed her eyes and refused to talk to him. He coaxed her round and an hour later she swallowed down that tube without a single complaint whilst he guided it through the valves into her small bowel. The nurse said Belle was her hero of the day for that. I concur.
I made it clear to the doctors this is not a long-term solution and that they must endeavour to uncover the mystery of her illness. They absolutely agree with that and have promised me this is only a short-term acute measure. Their hunches, still unproven, may point towards this being an autonomic disorder, which if diagnosed I’ll explain in a later post. It’s hard to believe that after eight long months we’ve just got rid of nine-year old Calvin’s NG tube , only for a second child to have the ruddy thing inserted. I only wish I had the skills of a graphic artist to be able to draw an electro- force -field -super -bowel-blaster and mast -cell -immuno repairer so we could fix these little hiccoughs in a matter of a few finely drawn pages.
Joining my League of Super Heroes is one of Belle and Calvin’s wonderful gastro consultants at Great Ormond Street Hospital. He rang me on my mobile yesterday evening and spent twenty minutes talking and reassuring me he was doing absolutely everything he could to get her transferred to a bed and that he would do everything within his power to diagnose her. Get that man a mask (not surgical) and flying cape (NOT one of those gaping NHS gowns that don’t do up at the back). He explained that the gastro ward is absolutely full to bursting with outlying patients in different specialist wards in the hospital who are waiting to move over and with other patients no doubt waiting in various regional hospitals around the country as well. Belle is on their priority list but a bed is unlikely to appear before Monday. He knows she desperately needs to be there which is why he was ringing to update me and formulate a care plan. We’ve also been waiting for a private bed in the hospital and he explained the reason that option hasn’t worked out yet is because the bed managers in the private wing are having a “discussion” about how much our health insurers will pay out. In spite of using every tactic in the book to scaremonger me last week about spiralling medical health costs and us being liable after 45k, last Friday our insurers finally gave in to my insistent and persistent demands to stop their prevarications and they did actually give me an authorisation code. BLAST THOSE LITTLE GREY, MEAN, BEAN COUNTER MEN INTO OUTER ORBIT PLEASE. Brian will be on the phone to both parties in the morning sending a proverbial rocket up their backsides. Whilst they argue and hypothesise over how long this emergency admission could take, how many tests she might have to undergo, exactly what the nature of her illness is and what it may tot up to , she has meanwhile deteriorated. Her super powers are waning and quite frankly they need to get their act together. They so deserve a virtual world swear word there. And , of course … KAPOW! That do? It’s an absolute disgrace because while no-one make a decision, beds come and go. Mr Super-Duper Consultant is livid with them all and this morning will be telling them to put his patient’s health first and foremost. These kind of rows are commonplace in the USA but it’s a shock to be encountering it here. Private health insurance schemes clearly don’t like shelling out for unknown illnesses requiring emergency admission. KER – CHOW! (That’s me, karate chopping the fat cats who run these businesses – God help you if it was ever your little kitten in Belle’s predicament).
Calvin is meanwhile struggling with his big sister’s illness as his own trauma returns as a visceral reminder. The lack of answers has sent him into a tail spin. My mini Mr Incredible has been sleeping very poorly since Belle was readmitted and he’s frankly, terrified of what is happening. For him , all his worst fears are occurring all over again as he literally trembles at what she is enduring and what may or not be coming. His old pattern of tiredness, anger, sadness, frustration, physical pain and aversion to being in school have returned with full force. I know it’s an echo and his body pain and nausea is shorthand for anxiety and distress but it’s been hard to walk in from the hospital and to then patiently cope with his meltdowns and try to put him back on track. I sent long emails in the early hours yesterday to his psychologist , whom he sees fortnightly, and head teacher and his TA in school because I know that he needs to lean on them. I’ve also told them one of the reasons we’ve coped with Belle’s illness for the last four months is because Calvin has been on an upward trajectory and that we simply don’t have the capacity for the additional physical and emotional distress that happens when Calvin struggles. He’s a gutsy, stretchy little chap though and I’m pretty sure with lots of support he’ll ping back. No pun and some puns intended!
I’m awake, bleary-eyed, in the wee small hours because my head is full. It helps to write this down, it helps when friends send messages and texts of support, when people drop in to the weird time-stands-still isolating world of hospitals, it helped when some of my friends came over on a school night with a bottle of wine and made me laugh, it helps when people don’t mind your wobbles and when they don’t forget about us, it helps when I can offload onto my online gastro parent buddies who are always there for you, it helps when strangers from around the world read my blog and send support , it helps me to feel better if any of what I write reaches others, it helps that my husband is an absolute rock and that our families never stop supporting and thinking of us. My blessings are bountiful, let me assure you. My own personal super hero power of being able to sniff a leaking colostomy bag from some considerable distance isn’t very useful here but maybe one can develop new powers in the face of adversity. My flippancy belies an inner worry that is overwhelming at times , that hurts and makes me struggle for breath when I panic about the children and their health but somehow we just keep plodding on, like all those other families and parents who I know are drawing on reserves of strength and whose endurance is being tested every day.
So my darling, beautiful, uncomplaining, sweet-natured, silver-quick little Mystery Girl, get better soon please while we fight this particular battle for you.
Planning for the unexpected trip
Emergency Hospital Admission
Great Ormond Street Hospital for Sick Children, London *****
What Other Parents said:
“I’d be lost without this hospital.”
“The nurses are really good”
“Shame about the cramped wards, but the care is outstanding”
“You know they’re safe once you get your child a bed here”
TRANSFER – POOR *
We arrived late at night with Belle’s dad carrying her through the hospital hunting through empty coridors as we desperately searched for the gastro ward, having endured a nail biting three hour car journey from our local hospital with her pain getting worse by the minute. We broke all the speed limits just trying to get her to the expert help she needed with me on two mobile phones desperately trying to hold my emotions in check. When her consultant rang and asked me to describe her symptoms, I couldn’t breathe properly because I was so panicked and I couldn’t even get the words out other than to say we were trying to get there. We honestly thought she was going to collapse. The police on the other line were trying to coordinate with us to see if they could sort out a blue light escort or whether they needed to call an ambulance for her. Fortunately the traffic in central London was light enough that we decided to press on because we knew an ambulance would take her to the local hospital to assess her because Great Ormond Street doesn’t have an A&E. Once we got her on to the ward her heart rate was down to 35 beats per minute and she was horribly dehydrated as she’d been off her drip for a number of hours since we left our local hospital. We just stood and watched as they stabilised her, my heart in my mouth and my hands clenched to stop them from shaking. We subsequently found out she should never have been transferred by us in our car but should have gone in an ambulance because it was so unsafe. Belle’s consultant at GOSH was pretty unhappy with the local hospital for not sorting out a safer transfer but I don’t think they realised how fast she would decline. I’ve learnt from this particular episode and will never allow that to happen again.
CARE – OUTSTANDING *****
Belle’s care was outstanding, thorough, respectful and utterly professional from every single member of staff on that ward from the play specialist, cleaners, care assistants, the nurses and all the doctors and technicians. I can’t belt out their praises loud enough. Belle’s doctors reassured me, listened to my endless questions, consulted with us and most importantly, Belle, and they tried their absolute best to make her well again whilst trying to understand what had caused her to be so acutely ill. Three previous local hospital admissions where she was declining by the day and dropping weight like a stone, dehydrated, unable to eat or drink or open her bowels obviously meant she desperately needed the expertise of the gastroenterologists at GOSH.
It took another week to clear her impacted bowel. There is no sophisticated way to do it. One of her lovely, lovely doctors kept telling me he was a very good plumber. Its no joke. He’s just more expensive than the average high street one. Clearing a traumatised bowel that is on shut down is pretty Heath Robinson. To spare Belle’s blushes all I can write is that I am very, very proud of the way she conducted herself, although some days she was actually too ill to care. Since she had been admitted to our local hospital and then in GOSH I sat by her bed as she just lay there with no energy to do anything other than sleep and try to go to the bathroom. During those days and night they were administering endless drugs and other procedures to clear her bowel, she was just very quiet and withdrawn and just stopped talking because she had run out of energy. Tick over is the best way I can describe her. She went through a local anaesthetic without a murmur to put a central line in to a large vein in her arm so that it could sit in her main artery next to her heart. Her veins had had such a hard time with cannulas that at least they could give her medicines more easily with a central line in. They were planning to feed her (TPN or parenteral nutrition) via the central line but they decided to hold off and give her more sugars in her I/V fluids, knowing she’d drop more weight but hoping her nausea would diminish and her appetite would return once she had been cleared and had been scoped.
I’ve watched her go through so much and stroked her hand whilst she writhed in agony and tolerated pretty unpleasant procedures so it’s very, very difficult to describe how hard that was. Hospital is a lonely place for parents in the middle of the night as you sit by their bedside. It’s even harder when only one of you can physically be there and the other parent is juggling the chaos at home three hours drive away. Supportive texts and warm messages from friends and family filter through punctuated by the occasional welcome visit from those who are in London. Most of the time Belle wasn’t up to visitors but it was wonderful when someone came and had a cup of tea or a sandwich with me.
Everyone talks about hospitals being like a bubble where time stops. In spite of being a newshound I must have been the last person on the planet to clock that Nelson Mandela had died. I look back through my diary and realise I’ve spent four of the last seven weeks in hospital with her, with the time in between caring for as she stopped eating and was vomiting relentlessly. Oh, and just before this final admission we managed to pull of an outstanding event and raised £10,000 for GOSH and two smaller charities. Madness but I’m so glad we did it. Living on that long term gastro ward puts your own troubles into perspective when you encounter families who have been there for months and months and children who are so ill they barely move. And the mothers, ( it is mostly mothers I encounter but by no means do I downgrade the support of their partners) are utterly magnificent as they shoulder the burden and cope with what would seem insurmountable to outsiders. You have snatched conversations in the kitchen trying to understand, gleaning some helpful information from those who have been through this and much, much worse. When I think about the additional strain our fundraising event placed us under (all of my own making) then I picture that smiley, resilient, tiny five year old boy on the same ward and his charming mother who is on an epic journey with him and I just know we did it for all the right reasons.
FACILITIES – NOT THE BEST BUT THEY TRIED HARD TO COMPENSATE FOR BEING IN THE OLDEST PART OF THE HOSPITAL **
The ward had very little natural light, was old and cramped but had at least been refurbished. The room was always clean but the noise from building work outside drove me crazy, especially when it started at 8 a.m. on the weekend. The accompanying aroma of brick dust was particularly special. Astonishingly the gastro ward doesn’t have en-suite bathrooms, which was tough for Belle. It’s pretty outdated to have to use a commode but needs must. My favourite moment was leaving her room to exit one ward and get to another to have a shower in the only parent bathroom between two wards. As I was walking down the corridor a helpful nurse (had to be a man of course), called me back said I’d dropped something. “That will be my clean knickers then.” Splendid. It was no worse than me flinging tampons everywhere the day before at the supermarket checkout as I hunted for my purse and was upending my burgeoning bag of random toys and till receipts and a spare colostomy bag for Calvin. Do you leave them and pretend they aren’t yours even though the whole queue has spotted what happened or do you laugh far too loudly as you retrieve the little blighters one by one as they hide under the plastic bags and disappear between the feet of the checkout person behind you? Frankly dropping my underwear on the ward floor in front of the nurses and doctor seems pretty mild after that.
Paediatric wards aren’t designed to be fun but they did try really hard to keep Belle occupied. I’ve now seen the entire broadcast output of Come Dine With Me – not something I’m hugely proud of. Radio Lolipop volunteers based at the hospital did come and entertain us one weekend by making a Christmas Tree by inflating surgical gloves. It was surprisingly fun and about the only time I saw Belle perk up.
Being in Central London is pretty tops it’s just a shame we weren’t here for fun. It’s an expensive jaunt for partners who need to find accommodation but at least friends and family were kind enough to give Brian a bed for the odd night here and there. Covent Garden is really close by but it was strange seeing all the decorations up and street performers entertaining the crowds while I was hunting for get well soon distractions.
I can’t recommend this for anyone but if your children have a difficult bowel diseases then this is the place you want to visit. I won’t bore you with all the tests she underwent but the gastro doctors did establish that she has a bowel with chronic slow transit and that impacts throughout the large bowel and then affects her small bowel too with some inflammation in her stomach. They ruled out lots of other unpleasant causes and also found her autonomic function seems to be affected which would explain why her heart rate is so low. After undergoing a heart ECHO and a 24 hour ECG we’re waiting to see if Belle will need more intervention to help balance her heart being brachycardic. It was such a relief once she was admitted because I had total confidence they would make her well and find out why she’d got into this state. She has a new very strict diet and drug instructions to follow and she can’t be left for more than two days without opening her bowels or else she has to go straight back into hospital to be cleared again. They can’t cure this condition and it’s going to be precarious and capricious for a while but it is hoped we can manage her condition better to avoid a repeat episode. Yah Boo Sucks to the local consultant who declared she had an eating disorder and that is was all psychosomatic. Grrrrrrrrrrrr. She still has her central line in until the end of December while we wait to see if her body settles down and hope that she starts to gain some weight. She’s looking tiny because her body was in starvation mode but I’m confident we can make lots of cake and get her to gain some of those lost kilos.
The irony of one child on the up whilst another has been unexpectedly on the way down has not been lost on me. But at least we are home in time for Christmas. Isn’t it marvellous when everyone asks my husband if he’s ready for Christmas as I choke on my tea? Christmas visits this house only because I work my butt off. His particular speciality on Xmas Eve is to spend hours preparing the fireplace to imitate the soot covered footprints of You Know Who (not Lord Voldemort, the Other One) without giving the game away by using pieces of shoe shaped, ridged cardboard and a broom handle as he creates mayhem, scatters furniture around and carves out giant reindeer teeth marks into the carrots. At 1 a.m. , after downing some port and finishing mince pies off with liberally scattered crumbs, he comes and finds me as I have finished making turkey stock, preparing everything else and am still frantically wrapping all the presents I organise. He then tells me he’s finally finished and he’s done a fantastic job….it’s amazing that every year I restrain myself from shoving the stuffing into where the sun don’t shine. So this year my patience is running thin because we are both worn out but still plodding on. I’ve been SOOOO grumpy with him for the last few days – it’s a back handed compliment because he’s actually the only one I can take it out on and not have to put on a good front. In spite of being rubbish at scheduled celebrations, he is a very good sponge as he absorbs my stress and keeps going whilst putting us all first, ahead of his own needs. So I may forgive him for being a Bah Humbug because he’s there in countless other ways.
He’s a wonderful dad too if somewhat OTT. You’ll see pictures of Belle’s grubby, ancient husky dog (AKA Husky – not very imaginative in this family) who has been with her since she was six weeks old. In October after her first hospital admission she had organised for him to go and be repaired by some nutty sewing lady who mends moth eaten furry friends. Brian sent Husky registered post and insured him for £500 , “because he’s irreplaceable and we’d have to go looking for him if he went missing”. I could just picture him distributing “MISSING DOG ” posters throughout the Royal Mail’s network of sorting offices. the flea bitten canine was then missing for weeks whilst Belle pined for him as she was in and out of hospital because he’s always slept in the crook of her arm. OMG I’m now guilty of personifying the stuffed toy – aaaaagh. The seamstress didn’t return our emails, was ex-directory and Brian, I kid you not, began to look her up to see if she held a criminal record whilst we had a farcical conversation where he was convinced this was some sicko front for exhorting more cash from soft parents as she was going to hold Husky for ransom. SIGH! By Belle’s third local hospital admission he was about to drive hundreds of miles and knock on the poor woman’s door like some Dementor. He was deadly serious but I managed to persuade him we had better things to do with our time. By the time Belle was admitted to GOSH, Brian drove home very late that night so he could be there the next morning for the courier. He waited all morning, retrieved the newly stuffed and repaired dog and then drove three hours back to London to deliver the faithful hound. Got to love him (Brian, not the bloody dog) for that.
On the eve of all things Crimbo, there was a quiet moment of joy on Saturday evening. After being home from hospital with Belle for a few days I realised Calvin’s confidence in eating has gone from strength to strength. Although his repertoire is pretty limited he’s back to where he was a year ago. So after being given the green light from his lovely, lovely dietitian we told him his nasal gastric tube could come out. He pulled it out himself, discarded it in the bin, asked if he could burn it and gave me a huge squeeze. So much else has been happening the last few months it would be easy to overlook what a gargantuan achievement that was for him . That six week solution in May turned into eight long months, most of it with him being fed a liquid formula through the tube and although it’s been hateful it has undoubtedly worked. His bowel has been rested, he doesn’t prolapse nearly as frequently from his stoma, he has put on some weight and he’s got stamina for the first time in his life. And I think he’s genuinely happy and learning to just be a small boy again. Joy. Joy. Joy. 2014 is definitely looking like it will be a better year than this one. Merry Christmas One and All.
I have only got the attention span of a gnat tonight as exhaustion has won the day. I’d love to write about the warmth and support we received at our Airline Party on Saturday and what a memorable night it was but I’ve completely run out of steam. We raised somewhere in the region of £9.5k and , more importantly , we helped to raise awareness into incurable childhood bowel diseases, which was a fantastic result. I haven’t yet downloaded the photos but give me some time and I will.
Unfortunately our lives are going on hold with my twelve year old daughter, Belle, pretty seriously ill in hospital with an impacted bowel that hasn’t been cleared for weeks and weeks, in spite of her doctors trying very hard. She’s dehydrated, has dropped to 46 kilos and is past caring about the invasive procedures they’re doing. She just wants to be able to eat and drink without relentless vomiting and she’d quite like her colon to wake up and start working. We’re waiting for a bed to become free at Great Ormond Street Hospital and then she’s going to be transferred in the next 48 hours.
It’s not going to be a quick fix. It’s going to be complicated and I’m not sure what’s coming. I want my girl, with her sweet, sweet nature, to just come home and to wake up suddenly feeling like she has her mojo back again. I also know that’s not going to happen and that she desperately needs the expertise of that team at Great Ormond Street, who have looked after her little brother so well on countless occasions. Whatever she is facing, her dad and I will help her face it with fortitude and love. Whatever happens we’re going to equip her to cope with her body in the best way so can so she can get back to her cello and her piano, to her friends and to her family without being too scarred by what is about to unfold.
On Saturday night I couldn’t escape that relentless worry about her, yet I looked at all those people supporting us, the charities , those unknown families out there who need genetic answers and a cure and I felt enveloped by their good will. I felt such pain about Belle and yet such peace in that support. It’s hard to explain but it meant everything, absolutely everything, to us.
Life is wonderful most of the time but sometimes tough. The weekend fundraiser whilst Belle deteriorated fell into both categories. I was cursing myself for putting us under such pressure with this mammoth event and yet now I wouldn’t change a thing. What I thought was a millstone became a salve and one I shall keep remembering, until the next time.
The last ten days have been a real bummer. It’s been one of those bonkers patches in family life where I keep pinching myself , hoping to wake up. The run of the mill colostomy bag changes, tube feeding, weekly outpatient appointments, tempting Calvin to eat, dealing with mood swings – all is forgiven, come back. That’s my normal. I MISS YOU. Belle being in hospital for the eighth day is not welcome. As an increasingly chirpy Calvin says with a muffled voice when he hides in his wardrobe before the daily visit from his community nurse , “Calvin’s not in. Please leave a message. Beeeeep!” That’s precisely how I feel. I hear you kid.
Let’s rewind but not dwell. Fairly significant abdominal surgery for me that took two and half hours of keyhole surgery to unstick my insides after three C-sections and an unplanned overnight stay with a catheter, oxygen, anti nausea drugs, Oramorph and a head that felt like a cartoon character had whacked it with two irons. I should have then been resting at home but was instead dealing with twelve year old Belle who was being increasingly unwell. A week ago I had a farce of a day where we were passed from pillar to post courtesy of being at the mercy of NHS out of hours GP services on a Saturday. It took me from 8a.m. until 6.30pm before she was finally admitted onto our local paediatric ward as she vomited all day long and I felt like passing out from the pain. A very dim-witted GP left me exasperated because he was kept saying how her abdomen wasn’t distended and she couldn’t possibly have an impacted bowel. I patiently explained the family history, that she always has a flat stomach, that she was admitted a month ago and I knew she was impacted again and could he kindly send me upstairs for her to be properly assessed in the paediatric unit. SIGH. They hooked a miserable Belle up to Klean Prep (aka drain cleaner) and a drip and I sat there wondering how this had happened so quickly since the last time she was admitted. Two days later she’d had eight (yes, eight) litres of the stuff pumped into her as it poured out the other end as liquid. I was perplexed as to why only liquid was emerging. Our usual paediatrician , who I have oodles of confidence in and who knows our family history extremely well is on long term absence, so Monday’s new consultant was a real treasure ; she couldn’t explain the liquid, sent Belle for an x-ray and insisted she wasn’t blocked and in spite of my confusion and queries, had a very special, finely honed skill of not listening to an experienced mum. She made a huge leap and declared as Belle was 12, clever and a girl with stress at home and lots of “inconclusive” tests we had to consider Belle had an eating disorder. I was stunned . Flummoxed. Floored. I said I strongly felt she wasn’t, that she’d already been diagnosed with dysmotility and slow transit by a specialist at Great Ormond Street and would she please talk to him. “I don’t need to do that, maybe tomorrow before your outpatient appointment, ” she replied tartly. Passive aggressive best describes this woman’s bedside manner.
I queried her discharging Belle and she reluctantly agreed to keep the bed open. She quite clearly thought I was neurotic, that Belle had deep psychological problems , that she, a generalist knew better than Belle’s specialist. I went and sat outside in the car and bawled my eyes out and sat there for twenty minutes wondering if I had this all wrong, if Belle had somehow cleverly managed to make herself sick in front of me for weeks and that the liquid poo was somehow psychosomatic. I rang a dear friend who had struggled with an eating disorder in the past who wonderfully, kindly, gently listened to my sobs and put me on the right track. Her logic then underpinned my thoughts for the next few hours as I sat there disbelieving and knew in my bones I was right about Belle.
The next morning I went to ask the nurse which vitamins and minerals the blood tests had showed Belle was deficient in, so that I could tell her Great Ormond Street consultant (GOS). I caught sight of a discharge letter that Mrs Passive -Aggressive had written. It said “Unknown reason for admission” and ” Discussed the possibility that Belle had developed an eating disorder with mum and she agreed it needed investigating.” I went mad. I said no such thing. I couldn’t believe she was prepared to discharge Belle when she was struggling to eat and was still so unwell. I couldn’t believe she’d written those untruths in her file. I told the ward sister she was no longer to be Belle’s consultant and I didn’t want her anywhere near my children.
My husband and I bundled Belle into the car. She slept for the three and half hours into central London , looking dreadful. Our wonderful , wonderful, sane GOS consultant listened very carefully as Belle articulated everything that had happened since he last saw her mid August. His conclusion was she was still impacted and completely full, that the Klean Prep had done nothing and just produced more overflow, that she had to go back to her hospital and they had to start clearing her that night and that he would be sending them a plan and that, no, she did not have an eating disorder and that we weren’t mad . We learnt that GOS doesn’t bother to x-ray impacted children as they consider it an inconclusive diagnostic tool as x-rays are notorious at being unable to detect soft tissue in the bowel. Yet our local hospital is obsessed by them. He also said some kids, like Belle, never have a distended abdomen but it doesn’t mean they aren’t clogged from top to bottom and that she was probably never cleared out the last time she was admitted a month ago. We clearly have a genetic problem with serious bowel disorders amongst our children, that hers has probably flared so badly as she’s hit puberty and he wondered if her colon had become inflamed, like Calvin’s, since he last scoped her in March. He’s put her on their emergency list and she’s going to be back there for bowel clearance and scopes for biopsies in 4-6 weeks time. Every time you see the experts at GOS who deal with complex problems as a matter of course, talk to us with respect and intelligence, reassure us and talk us through logical options and a treatment plan, you feel the relief flooding through. This, guys, is why I’m doing this huge fundraiser for you in a week’s time. It’s terrible timing for us personally yet it’s absolutely perfect timing too.
Belle was so hungry in the car on the way home she slowly nibbled some food. An hour later we kept having to make repeated stops at the side of the road so she could be sick. We were back to square one where she couldn’t keep anything down. I walked into that ward vindicated and head held high as Belle continued to vomit. I have to say the nurses have been consistent and wonderful and quietly told me they never believed what that consultant had said. They had the Picolax and the other bowel prep medicine ready. There was no point trying the Klean Prep, it clearly doesn’t work so GOS decided to give her a stimulant which they use to clear out kids before scopes, which we’ve done many times before. Liquid dynamite – it worked before Belle’s scopes in March, let’s hope it works again.
I spent the night by her side worrying sick that if this didn’t work she’d be transferred to London and be going through surgery to manually evacuate her small bowel. After a rough night, Belle produced what I didn’t think was humanly possible. My husband said he’d like to wave it under the nose of Mrs Passive-Aggressive and ask her if she still thought Belle had an eating disorder and wasn’t impacted. We were furious. That morning Mrs P-A walked into Belle’s room during ward round to start examining her. Nuh-huh. I told her to stop. What then ensued was a pretty forceful argument where she just wouldn’t accept she’d screwed up and she kept insisting the x-ray was clear. Unbelievable. I could feel the heat crawling under my skin as I tried not to explode at her. Now I know what it feels like to be a lioness protecting your cub. I always thought it was a cheese-laden analogy but it turns out to be true when your back is up against the wall and you’re shielding your child from someone you think is dangerous. That animal instinct just kicked in and I couldn’t stop my ferocity. I wasn’t too rude, I didn’t swear, I didn’t shout but I was so determined she wasn’t coming near Belle again. She ended up leaving the room, as my Grandma would have coined, with a flea in her ear.
The really terrifying part of this, incompetence aside, is that none of the other junior doctors felt able to question her judgement. If Brian operated his flights when he’s flying passengers and no First Officer or Captain felt able to question his judgement as a Training Captain, the risk of an accident increases and that’s how people can die. It’s no different in the NHS or any other hierarchical structure. Since then Belle has remained in hospital because her gut is moving so slowly and she’s still struggling to eat. Yesterday a new registrar turned up. When we asked how they’d know when Belle would be cleared out and could come home, she started talking about sending her for an x-ray again. What? Why on earth are they reinventing the wheel every time? Our exasperation must have shown. What also became apparent is a reluctance to call Belle’s consultant at GOS. Yet we have little confidence they know what they’re doing and she was defensive when we queried why they weren’t calling him to talk through Belle’s treatment. Extraordinary. By last night, at the beginning of another weekend, they still hadn’t reached him.
I’ve come home to see the boys and spend some time with them this morning but we shall be going to back to the hospital at lunchtime to try and pin the weekend consultant down. Belle has meanwhile lost a lot of kilos , when she didn’t have much to spare. She’s eating like a sparrow because she either doesn’t feel hungry or feels sick. The hospital’s really switched on dietitian, who looked after Calvin when he was first being tube fed, came and saw us yesterday. I promptly went out and bought smoothies and some dairy and soya free biscuits, Hob Nobs, because they’re laded with sugar. Belle managed to drink half a carton of EO28, a nutrition supplement, in fact the same elemental formula Calvin takes in a powder form. The orange and grapefruit flavouring doesn’t disguise how revolting it is but at least she managed to drink some of it. She’s got to have two a day. The hope is that once her impacted bowel is cleared, her appetite will return and then we wait to see if her new drug regime keeps her sluggish bowel moving enough so this doesn’t happen again.
On the upside, Calvin is making huge leaps and bounds forwards. His feelings about eating conventional food oscillates but he’s trying so damn hard. More of that story in another post or I’ll bore the pants off everyone. Now, Peeps, you know why, in spite of being practically teetotal, I actually feel the need for a G&T, one the size my Irish brother-in-law would pour for me!
- Lessons learnt this week; ripe pomegranates cause allergic reactions and never give up (afeedersdigest.wordpress.com)
I should have know my daughter, Belle, and ripe pomegranates are not a good mix. Tangy pineapple and kiwi fruit have given her swollen lips before I didn’t think about that when we saw this perfect specimen in Wholefoods, beckoning invitingly with it’s rosy red, shiny skin. I remember my big sister used to save her pennies as a child and buy a pomegranate from the greengrocer van and make it last FOREVER. If I was really lucky she’d let me have some. I swear she use to eat it seed by seed, savouring every jewelled morsel. Personally I always found the pips annoying as the flesh disappeared and you were always left wondering whether you really wanted to chew, swallow or spit them out. I was never , ever able to save money but she was really good at it. Most kids buy sweets with pocket money, not her. She still gorges on fruit as though they are sweets, good job she now lives in Oz where locally grown figs, grapes and oranges are plentiful.
When she was about ten years old she would add to her coffers in the summer by cycling out of town to the local Pick Your Own (could you imagine parents allowing cosseted kids do that now?) and cramming punnets full of strawberries for the local farmer to sell. I don’t think she earned more than about 8pence a punnet. This was seen as fair exploitation, long before the minimum wage. She took her hard earned wages to a family holiday in France and promptly lost them in one fell swoop when she misplaced her purse . I’m pretty sure my generous dad, who was always a soft touch, reimbursed her. Every Saturday he’d take my twin brother and I to buy sweets and comics (remember Whizzer and Chips?) ostensibly so he could buy himself a sticky bun and scoff it before we got home and my mum cottoned on to the fact he’d been eating contraband again. He still has stashes of goodies in his car and around the house – not much has changed! Black and white mints are his all time favourite. His sweet tooth goes back to endless indulgent, elderly aunts who would slip him cash whenever they could. If he wasn’t in the sweetshop or terrorising the sleepy neighbourhood in Haslemere, Surrey, with his mischievous antics he’d be saving up for model aeroplanes. I love the story of his dad, my Grandad, whose affectionate nickname was Tiger, collecting him from school at lunchtime and taking him to the pub to sit on the step with a ginger beer before being taken back to school in the afternoon. This is turning into a memory blog, but it’s gentle fun, so I shall continue.
The sight of that pomegranate made me think nostalgically about my sister and her determined ways and how much I miss her because she inconveniently moved to the other side of the world, so I shelled out for this oversized fruit hoping Belle would like it as much as her aunt. BTW I still haven’t forgiven her for dividing our small, shared childhood bedroom in half with a piece of cotton thread and telling me my side was by the window and hers was by the door and I wasn’t to cross the line and if I did, I’d get thumped. “But the door is on your side, ” I protested. “Bad luck,” she replied as I jumped the line trying to avoid her wallops. Apart from the odd infraction, she was really pretty tolerant of me, and fun , even when my endless books and clutter encroached into her space.
The day after eating the pomegranate, Belle came and told me her mouth was really sore inside and I noticed her lips were red and swollen and she couldn’t speak properly. It wasn’t getting any worse but her lips did then start to peel as though they had been burnt. We worked out what had caused it and threw the rest of the juicy fruit away. According to my FB buddies from various support groups I dip in and out of , it could have been Oral Allergy Syndrome or just a straightforward initial allergic reaction that could build if she eats it again. I’ll be following it up with our allergy dietitian for advice and I won’t be swayed by nostalgia again.
Make some home-made fun out of misery; I wrote in my last post about Chicken Pox descending on my usually exuberant three year old, Taz , during the half term holidays. When my twin and I had chicken pox as children, followed swiftly by a nasty bout of mumps, David’s face blew up like the elephant man sporting a triple chin. My older siblings thought it was so funny they took a photo of him outside, still smiling in his amiable way in a hand knitted red jumper with a really swollen neck and face. So mean. But it was considered good sport in a big family. That photo made it in to the picture montage for our mum’s recent 70th celebrations and still had us all in fits of laughter.
Taz’s pox was swiftly followed by Calvin waking me up with a burning fever and barely able to stand upright. I thought he was coming down with it too but the spots didn’t appear, instead he’s had a week of baffling, pongy diarrhoea. His stoma output has only just returned to normal. Unfortunately his abdominal skin that hugs the stoma is terribly sore and open. I’ve used a multitude of different products and remedies to heal it and it stubbornly refuses to comply. He hates his bag changes at the moment and I’ve thought about using egg white around it to create a protective layer but he’s really allergic to egg so I think I’m going to raid the stoma stock cupboard in the local hospital this week. There’s a reason I avoid planning holidays in October half term break because you can guarantee one of the kids will be sick. Note to oneself; never book theatre trips or holidays in the winter – something usually throws a spanner in the works.
Al of the kids’ consultants seem to have been beamed up by aliens because I just cannot pin them down. Belle is still being sick or feeling really sick twenty minutes after eating small amounts of food. She keeps asking me to make her soup because she doesn’t want to eat any bulk, even though she’s hungry. Not good. And no, she’s not stressed nor does she have an eating disorder – we like cake far too much in this family for that to happen. I have a gut (sorry!) feeling this is much more than the bowel blockages and slow transit she’s been having. I just wonder if she’s got a problem with her stomach emptying as well. My instinct that something else is going on is usually right, it just takes a while for it to dawn on me. I don’t want to put her through more tests but nor do I want this to carry on. Maybe I’ve got to use our second annual appointment our measly minded health insurers have reluctantly agreed to, to get her seen by her Great Ormond Street consultant more quickly. Lesson three: always play the system if you have to.
I’m going to end on the best parts of my week. The prizes for our fundraising auction and raffle at The Airline party are rolling in fast, thanks to the generosity of local businesses and tourist attractions. I’m starting to think I might just pull this event off. The Wychwood Music Festival at Cheltenham Racecourse has very generously donated a weekend family ticket for Summer 2014 , which is utterly fantastic. Their tickets sell like hot cakes so I’m pretty sure that will be a popular bid. When we explain we’re fundraising for childhood bowel diseases, the response and generosity is astounding. Friends and family keep supporting us in so many ways with this fundraising event, it makes us feel as though many strong arms are wrapped around us. I felt that once before when I walked up the aisle to say, “I do”, and it’s an irreplaceable, magic feeling.
I went to Parents’ Evening at school for Calvin. They are hugely encouraged by his progress and are confident he should definitely sit the eleven plus next September for our local grammar schools. In spite of missing nearly two years of school since Foundation and being born on the 30th August, he’s somehow managed to find his way through. Of course I’m relieved and bursting about it but what’s really remarkable is how far he’s travelled. Twelve months ago he wasn’t in school , he was deeply traumatised and very depressed. We were absolutely desperate about his wellbeing and didn’t know if we could keep him safe. I have never felt so frantic in all my life. I spent all that October half term making consultants listen until he had an urgent referral to a very good NHS paediatric psychiatrist. Within weeks he was also back in hospital having an emergency bowel section and a new stoma formed. Things felt pretty bleak.
Yet after speaking to his teacher and head teacher I got into my car with a spring in my step. I cried with joy before I could gather myself to start the engine. Those tears of relief were unstoppable. It was the first time in the last two years where I could look ahead, without trepidation, towards Calvin’s future . There was no fear, no fog but instead a growing certainty that maybe his illness won’t leave such deep childhood scars behind.
My last piece of good news was the birth of a beautiful new niece, a much longed for and hard won baby. You can’t beat news like that for family happiness.
Lesson learnt – be hopeful, never, ever give up and count your blessings, wherever they may come from.
Here endeth the lesson.
Living with and loving Calvin is best described as an emotional rollercoaster you can’t quite stop and get off. If I find it hard, I often wonder what it must feel like for him. About six weeks ago he’d been spoiling for a fight for weeks. Everything I said or did was deemed unreasonable and elicited anger or growling from him. I knew why; getting to grips with trying to eat, going back to school and having a mother who refused to collect him early, tiredness, a stoma that kept producing diarrhoea – you know, the usual, the ups and downs.
What caused this particular dip? Homework i.e. work that parents feel obliged their offspring should complete by the designated time whilst said offspring usually resists for as long as possible. On this heady occasion I had spent the weekend persuading him to turn into a diligent girly swot who would be delighted to knuckle down with no cattle prodding from me. You know when teachers send kids home with project work – think Roman Coliseum, rainforest animal, pirate ship, space, – well, my heart sinks every time. I loathe it and would rather chew on my toenails. Calvin hates it. I swing between burning resentment that five weekends are spent with his refusal to engage, dominating everything we do, and irritation that primary school children are given vast projects that inevitably ends up involving parents who are hassled and time poor. If you are one of the rare breed who rubs their hands in goody gum-drops glee and gets heavily stuck in, so much so that you end up replicating the Eiffel Tower in perfect symmetry with matchsticks, good for you, you weirdo. It’s the kid’s project, not yours. I’ve seen you, you keeno, carting in your child’s Tudor House lovingly crafted with your finest carpentry tools, holding the guinea pig sized edifice aloft through the playground as you declare loudly that little Jonny spent hours on it, but, DON’T TOUCH IT, as you growl at any little person who comes to admire your, oops , sorry, his handiwork.
I wish I were more like my friend Cathy who refuses to get involved and leaves it to her disorganised daughter to make something out of recycled loo rolls and whatever old paint is hanging around. I try my best to sit in that nonchalant hands off camp until about two weeks before the deadline where I then re-read the instructions, sigh heavily and start the game of faux sing-song, “this will be fun and interesting. Let’s come up with some ideas” and then end up cajoling and helping for the next two Sunday afternoons. Six weeks ago I was still operating a hands-off policy as I was sat with a cup of tea trying to read yesterday’s paper. “Come on Calvin. You’ve got to think about this India project. I’m not doing it for you.” Whack. Out of nowhere he hit me really hard on my arm . He looked startled, then did it again. I don’t think he could quite believe he’d done it. The second thump made my eyes sting. By the eighth I’d had enough. I got up , shouted at him and ended up holding his shoulders and then pushing him away just to stop him hurting me. He was sad, I was sad. His explosion came out of nowhere. He ran upstairs and I went into the kitchen shaking. Twenty minutes later I went to find him. He was curled under his bed refusing to come out. Talk about little boy lost. I persuaded him out. He burst into tears so I wrapped my arms around him and held him tight as his body heaved with sobs. “I’m so sorry Mummy. I’ve been wanting to do that to you for such a long time. It felt good but now I feel horrible. Every day my body feels tense. My fists are curled into hard little balls because I want to hit someone but I never do. I hold it inside. I want to rip my tube out and scratch my stoma until it bleeds. Do you know what that feels like? I’m so angry. I’m so sorry. Make it stop. ” My salty tears fell into his tousled hair as I rocked him and told him it would all be ok. That, dear reader, is the down bit of the rollercoaster we can’t stop.
I wouldn’t want a rerun of that episode but it released some long held, bottled up emotions and tension. I think he understood that hitting someone very hard may help temporarily but isn’t the solution. He hasn’t done it since. I spent that evening berating myself for shouting at him and felt I’d been a terrible parent who’d let him down. I was deeply upset by it. On reflection, and with help from the counsellor I talk to once a week, I think I just did my best in very challenging circumstances. I simply didn’t see his outburst coming, he snapped so fast, I sat there frozen while it happened. I think it shocked him as much as it did me. There’s no doubt that I’m his emotional punchbag, the person he feels safest with to let go of his frustrations. He is still vociferous when he says he blames me for his colostomy because I agreed to it and signed the consent form. I hope when he’s older he’ll understand. Meanwhile I soak it up, try to stay patient and keep trying to stick to our boundaries.
Fortunately he hasn’t been physical with me since. He still growls at me, is unreasonable, shouts, over-reacts to the smallest prompt, cops a deaf one, but he really isn’t like that all the time. He hasn’t hit himself for weeks, he’s been so much more tactile, he’s started to be a big brother to three year old Taz again and has been kind instead of winding him up, and of course, he began to eat again. More support in school and starting CBT with a new psychologist has all helped tip the balance in his favour. In the last few weeks he’s being funny again , making chirpy little noises, playing jokes, not getting upset over the slightest thing, every now and again he’ll come and find me and tell me “I’m the best Mummy” (boy , that felt good because it’s been months since he’s come to me – needing me for practical medical tasks is different from seeking me out and wanting my warmth). I feel like we’ve begun to see the real Calvin again. He’s coping better with school, he’s got noticeably more stamina, he’s got muscle definition for the first time and has maintained his weight and is less fearful of food. I’m convinced this is thanks to his body being able to absorb the nutrients from the elemental feed, to the patience and understanding from his new psychologist talking to him about eating, by me trying my damndest to be less stressed and to cope with his ups and downs in a more effective way, to sticking to family normality as much as possible and to his bowel being rested and giving his body time to find its strength again after months of being unwell. Above all, he’s happier and coping better. It makes your heart sing, doesn’t it?
Half tem holidays have been dominated by chicken pox with Taz resembling a Damien Hirst painting and really living up to his virtual world name sake, the Tasmanian Devil. How that child still keeps going I will never know. Forget the real fever, we’ve all certainly got cabin fever. Calvin came down with a high temperature forty eight hours ago and I’m just really hoping he doesn’t wake up with those familiar blisters this morning. He had the pox so mildly when he was little and he’s been on immunosuppressants for such a long time, with a history of being neutropenic (poor bone marrow function), I’m really hoping his little virus busting defence soldiers have held the line. We’ll see. When he woke me up in the middle of Friday night , feeling unwell, he started to panic and immediately fell back into his “I feel sick” mantra. He refused to eat anything on Saturday, which in itself isn’t uncommon with a temperature, but his response to food was the same old intense panic and fear and point blank refusal that we saw earlier this Summer. Being unwell must have triggered all sorts of complicated emotional reactions for him, mostly fear of vomiting and disliking feeling nauseous. I didn’t react, tried to persuade him to have his elemental feed at a slower rate but he was having none of it. He had two tiny scoops of safe sorbet all day.
By Sunday morning he felt so weak I persuaded him to let me put him on his feed. Unfortunately the tube was resisting any attempt to aspirate stomach juices. All I could feel was pressure. I tried every trick in the book for an hour and half and ended up calling in the cavalry asking for help from the paediatric community nursing team, who are fortunately on call seven days a week. The lovely Jane arrived an hour later from the blustery Autumnal weather, smiling and calm. After another hour of trying, her years of skill came up trumps and she eventually was able to test the tube was in his stomach and persuade it to cooperate with us, while Calvin lay on the sofa with a temperature , feeling miserable. At least she managed to avoid having to feed another tube down. I slowed the feed right down, he drank some Dioralyte too and he picked up a bit. His colostomy bag changes were equally challenging , emitting evil smelling diarrhoea that ran away from me leaving behind a raw looking stoma with open sores on his skin around it. I felt really sorry for him as he bit his lip and let me clean him up. This is all part of the ups and downs , the ins and outs of his life. I only share this so you understand what these kids silently go through. It’s remarkable his outbursts don’t happen more often and that there are definite ups in between the challenges and what’s more, I think they’re lasting for longer.
Final words of wisdom; lesson learnt – recycle all topic homework from older siblings for youngest child who starts school next year. BTW , we, sorry he, did hand the India project in, albeit a day late. I appealed to his animal obsession and persuaded him to write about five sacred animals of India. Thank God for the Hobbycraft shop where I found Indian craft paper and large cardboard letters to spell out India. Job well done.