Childrens’ Hospital – Day 46, and counting.

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 How does one begin to describe watching her in pain, becoming withdrawn, the sleepless nights by her bed, the complexity of malnutrition, the sadness we feel seeing her just existing in a hospital bed and the overwhelming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.

 

Mystery Girl

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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.

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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).

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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.

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Blow wind, blow

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While the winter storms have been battering Old Blighty  this holiday season, I know just how she feels. As the oppressive, mutinous looking storm clouds gather and unleash their fury on the sodden earth below, I have battened down the hatches and stayed inside with the kids. We’ve played a lot of board games, watched far too many DVDs, baked  a lot and only ventured outside to be lashed by the stinging rain and wind whipping through everything when I’ve had to get either Calvin or Belle to hospital appointments . On the rare blue days in between the Atlantic lows we have been walking in the hills nearby blowing the cobwebs away .  The visibility was crystal clear as we looked down upon the Severn Valley where we could see as far as the Welsh Black Mountains and even the Severn Bridge, which is about seventy miles away. Tewkesbury Abbey stood proud with encroaching waters surrounding the town as the river snaked its way along, growing fat as it spreads its girth and swallows up green fields and roads and rudely enters property without permission.

After finally having my family home under one roof, after Belle’s long hospital admission in London, we celebrated Taz’s fourth birthday and then  Christmas with family.  I was on my knees by Christmas Eve but my darling mother came and helped me prep vegetables as we sat companionably in the kitchen while she made the turkey stock and we finished everything off. There’s something immensely comforting about making her recipe for lemon, herb and breadcrumb stuffing and then smelling that warm lemon scent as it hangs in the air once the bird is being cooked.  A little like the weather,  there were periods of calm and joy in the house. Calvin’s nasal gastric tube came out just before Christmas and I watched that boy ask for seconds on Christmas Day and I gulped back happy tears. It is simply wonderful and  a secret pleasure every time I see him eat without anxiety, every time I look at his pretty face without a sodding great tube taped to one side, every time I see him laughing and joining in. That little  boy has come a long, long way in the last few months. Alleluia.

Once Brian had set up the wine and mice pie and obligatory carrot on Christmas Eve and the stockings were out and we had  finally persuaded Taz to close his eyes, accompanied with the usual , “I’m ringing the Elves” or “You’ll be going back on the Naughty List” and, “That’s it. Your stocking is going back in the cupboard.” We sat down with  the older two and played a board game.  I simply cannot remember the last time we had so much fun , without stress and without feeling like there was a job I had to go and do. There has been no capacity to relax and spend time like that as a family for months as we’ve been dealing with one medical crisis after another. Another little golden moment.

This week I’ve had to deal with Calvin’s ulcerated stoma which he was , understandably, pretty cheesed off about. Visiting the stoma nurses at the hospital was one of those stormy days for him where his face was black as thunder and fury. His old anxieties about hospitals, things going wrong, hating his stoma, he’ll never accept it , it’s my fault etc.  all resurfaced as he vented at me. With the help of his psychologist and the stoma nurses we’ve almost cleared up the skin and finally persuaded him to try a new bag with Manuka honey built into the base plate to try and help heal his super sensitive skin.  For him to actually engage with making decisions about the right equipment was another small victory because it’s part of him starting to take responsibility for his colostomy needs. A little slice of blue sky came back that day. Another clear sky moment was Belle making some free from bread for Calvin (no wheat, dairy, soya, rice , maize and oats) which a) was edible and b) he actually likes. Yay! One to us, nil to the bowel disease.

The tiredness from weeks and weeks of being in and out of hospital has hit me hard. I knew it was coming as my adrenalin could only last so long. I cancelled people coming to stay and I really have just hunkered down and for once in my life have just stopped and tried to rest. Just before Christmas a really exciting opportunity unexpectedly  presented itself  to do some work this year. My initial enthusiasm and desire to feel useful beyond changing colostomy bags and to return to work was  really seductive and I said yes, convincing myself I could make it fit around my children.  Hellooo? Cuck-00o! It took some of my wider family talking to me before sense prevailed over stubbornness. I badly wanted to do it but the truth is there is no capacity in our lives for me to add yet more complexity. I know I’ll kill myself trying to do everything at one hundred per cent, so,  with a pang of regret I’ve had to extricate myself from it all and tell myself to be patient, that one day someone will want to employ me again and that I do still have useful skills beyond dealing with dodgy bowels.

2014. A new start and all that. Phhht. Yes, well.  On the blue days I firmly believe that, then, the maelstrom arrives again and I’m not so sure this year will be any different from the last. We’ll see. Belle came and found us on Thursday night and told me she felt sick again. All my alarm bells were clanging, like the ones on mahhhoosive  fire engines. I fired a hundred questions at her and went off to email her consultant. She came and found me in tears and told us she’s been vomiting since four days after she left hospital but didn’t want to tell her doctors, didn’t want to tell me, didn’t want to go back to hospital….Brian and I just looked at each other, the stress lines reappeared on his forehead and I was just stunned. I had absolutely no idea. That’s a fortnight of her being sick and it building every day to being uncontrollable again. It’s got to the stage where she could no longer hide it. She asked if we were angry with her for lying and I just wrapped my arms around her and hugged her tight. How could we possibly be angry with a twelve year old who is scared, doesn’t want to face it and who is trying to cope with something, through no fault of her own?

All day Friday I had the unenviable task of trying to track down all the different doctors who have been looking after her   to make a plan and to tell them what was happening. All of them were on annual leave. No matter, someone will pick up emails and I had various NHS secretaries and clinical assistants tracking them down and getting messages to them.  My bloodhound tactics and persistence I used when I was a journalist do actually come in use sometimes. By the end of the day I had organised open access to our local hospital this weekend (which I shall be using today),  and I received a call from the Big Cheese from Great Ormond Street Hospital who very kindly rang me, even though he’s on holiday. My cunning plans worked. He thinks this is much more than just dysmotility and slow transit constipation, that it doesn’t quite fit the usual pattern but that he needs her first of all to be stabilised again and then we’ll probably be back in GOSH  for her to be monitored while they try to work out what on earth is going on. Do you see what I mean about the variable weather pattern now?  There’s always another bloody depression building and storm clouds on the horizon.

Yesterday the vomiting gathered pace and I don’t think she’s keeping any of her medicines down either. I can’t delay the inevitable any longer so while Brian went to work early this morning (someone has to pay the mortgage) I shall be returning to our local hospital with her,  armed with instructions from GOSH so no-one comes steaming in and tries to start treating her without the approval from the Big Fromage. Thank God for him is all I can say.

I packed away the decorations, which were starting to annoy me, growled at the long suffering Brian all day yesterday, tried not to let my worries creep in, re-stocked the freezer for the week ahead so my mother-in-law, my mum and my nanny are well armed , ploughed through laundry and got the suitcase down ready for hospital. I’m looking out of the window and can see beautiful mackerel clouds lit like soft yellow roses by the sunrise interspersed with  streaks of winter blue. The weather man says the storm is coming later today, but it’s not here quite yet. Blow wind, blow. We’ll still be here. We’ll still be standing when you’ve done your worst.

Great Ormond Street Hospital – Trip Rating *****

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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”

Patient photos

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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.

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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.

ENTERTAINMENT  ***

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.

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LOCATION  *****

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.

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RECOMMENDATION ****

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.

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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.

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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.

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In a Nutshell…

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.

 

 

 

 

Someone get me a G&T

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 can cause allergic reactions and never, ever give up

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Lesson One:

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 againHe 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.

Lesson Two:

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.

Lesson Three:

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.

Lesson Four:

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.

Are we on or off the rollercoaster?

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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.

eiffeltower

 

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.

Tks Nurse Jane

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.

Hang out the bunting, Calvin joined us for dinner and ate REAL food.

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Calvin’s brain and bowel have finally woken up and decided that maybe, just maybe it’s ok to try and eat some proper  nosh. After spending another unexpected, extremely tedious week in hospital with my daughter after  her bowel decided to go to sleep, I came home with her  and decided to make one of my casseroles so we could have a family meal after another disrupted week. I also knew it was a sure-fire way of enticing  my three year old, Taz, otherwise known as Protein King , to eat a meal. Protein King bears an uncanny resemblance to a donkey as he refuses to eat vegetables, unless I bury them inside something he considers more palatable. He’s not that keen on fruit either. And his food allergies don’t help when he’s already on a restricted diet. I know. I know. I could do without that too (if only the electronic world could see my raised eyebrows and resigned parent face who has run out of energy and good intentions by the third child).

Back to my story; I made comforting beef in red wine casserole for everyone to eat as a family. As I was serving it up, Calvin came in and sniffed the kitchen aroma. Usually this elicits  some kind of annoyance or distress because he finds the smell can often make him nauseous.

“That smells good. What is it?”

“Beef casserole…….LONG PAUSE……would you like to try some?”

EVEN LONGER PAUSE…”OK”

I serve a mouse portion and push my luck with a tiny new potato, savoy cabbage and peas. Calvin sits down with everyone else and just starts eating, whilst we are all open mouthed, glancing askance but trying not to stare. Remember, this is a child who has been tube fed an elemental diet for the last seven months, give or take a few weeks. What was meant to be a six week temporary solution to circumnavigate  his inability to eat normal food conventionally,  became the only way he could actually eat and thrive . It’s weirdly become part of the routine. He hasn’t sat at the table with us for months. he hasn’t pick up cutlery for months. He hasn’t taken any from pleasure from food for a very long, long time. He’s had no desire to eat a meal without me persuading him for about nine months.

With sheer delight I watched him surreptitiously  as he ate it all, and then, asked for more! Oh you lovely little Oliver Twist (without the pickpocketing and abandonment issues, of course). To see that nine year old boy pick up a knife and fork , join us  and eat with no upset, was unadulterated joy. I forgot the taste of my own food and just wanted to soak up the view as I watched him. Boy, that moment has been  a long time coming. As we cleared the plates we glanced into the dining room and watched Calvin lick his plate. Go ahead, kid, lick it all you like. Normal rules don’t apply here. He didn’t feel sick afterwards, he beamed broadly and said it was nice to join in again. Result!

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It’s been a week since then and of course, nothing ever runs smoothly, as he’s declared war on two of the three foods he has been trying to eat for the last month – vegan chocolate drops and chocolate coconut milk . So he’s been left with plain crisps as his only back up and I suspect they will drop off the favourite list at some point. Twas ever thus.  His brain went from love to hate in one huge swingometer action. NOPE . NO WAY. NO CHANCE. The old grey matter decided to revert to type and decided those few little smackerels of food were to be side lined into a  demarcated no-go area. Nausea and fear of eating won the day with those and yet, and yet, every evening he’s been trying little smatterings of dinner; grilled white fish – tick, a few chips – tick, even lamb Bolognese  - tick. Apple- tick. Vegetables seem to be the easiest for him. Chicken – nuh-uh. Not yet, anyway. My home made bread, cereal, oat milk, our batches of free from friendly  cookies and cakes   – definitely not even a flicker of interest. That’s ok. I can be patient. I shall just keep on waiting for his brain to make those positive connections.

It may be very early days but along with his new psychological therapy this has been a giant ‘s leap for a small boy to take, and it’s generally in a forward direction, definitely up and down but with an onward trajectory. Now you know why I’m hanging out the metaphorical bunting.

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Boy, what a week! Get the liquid dynamite ready….

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I’ve been suspiciously quiet with my blog for the last few weeks.  To be pithy; dealing with an angry Calvin, a tonne of routine  medical appointments, trying to get my fundraiser squared away, gearing up to run 5k (in a shamefully slow time but at least I’ve been doing it) , oh, and six days emergency hospital admission for Calvin’s big sister, Belle.   I certainly didn’t see that last one coming. Yes, she has her own diagnosis with an infuriating sluggish colon,  not quiite the same illness as her brother but nonetheless manifesting in an unpleasant,  unpredictable way. Maybe the Connolly Kids’ Awkward-Squad Bowel will make it into medical textbooks?

Can you imagine being a twelve year old girl and having to discuss your toileting habits with doctors and , even worse, your mum?  I promised her I would never write in detail about it but let me tell you she showed top marks for fortitude whilst she was  de-bunged. I’ve dealt with other bowel problems, but what is beautifully coined a “loaded” bowel with “overflow” , was a whole new  experience. We’ve known her plumbing hasn’t been on top form this term but she struggled on; took the hated drugs, trundled off to school every day, played sport and music with the same sunny enthusiasm but then she’d come home exhausted, eating increasingly smaller amounts and feeling pretty sick after every meal.

Five days before my grey matter eventually guessed what was happening she kept vomiting twenty minutes after she ate. No fever, so I knew it wasn’t a gastro bug. Email duly dispatched to her paediatrician but a certain S’s law meant it got worse over  a weekend. On the Monday she was being sick in school and didn’t tell anyone, That evening she lay in front of the fire for hours completely lethargic. The next morning she persuaded me she could keep a bowl of cornflakes down and went to school. Two hours later they called me to come and get her. More discussions with her doctor followed with a plan to bring her in the next day.  By eleven o clock that night she had been relentlessly vomiting for hours. I pulled my clothes back on, woke my husband and said I wasn’t happy and I was taking her to A&E. Bear in mind it has to be pretty bad for me to say that because I spend my life avoiding the place. Three hours spent sitting on hard chairs with her head bent over a bowl I asked for them to x-ray her just in case she was blocked up.   BINGO! The evidence was irrefutable. No wonder she felt so foul with all those toxins sitting inside her. I learnt that just because you poo liquid doesn’t mean you aren’t constipated, as the liquid finds its way around the blockages. For those who find this squeamish – man up. We all eat (well apart from Calvin) , we all go to the loo, even the Queen, and we should be able to talk about this in a straightforward way. That’s why I love any medical professional and anyone who has knowledge or experience of bowel diseases because they talk about it all without batting an eyelid. That British prudery has to go I’m afraid.

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I have a great friend whose now grown-up daughter put up with most appalling bowel as a child and now has an ACE. Suze and her daughter had a pretty tough time when I suspect there was absolutely no support out there.  The great thing about Suze is she has a wicked sense of humour and sees the funny in everything. She’s a very good tonic so I rang her while I was stuck on the children’s ward  because I knew she just “gets it”. She sent me an FB message asking if they were going to clear Belle out with Picolax or as she calls it, liquid dynamite. No such luck Suze, this time they poured Klean Prep  down her, aka drain cleaner. These manufacturers need to cultivate a sense of humour;  why not clean as a whistle or bog off bowel ? Belle was still hooked up to a drip and puking so they fed a nasal gastric tube down her – “don’t worry darling, just swallow as it goes down, try to not choke, it’ll be over soon, Calvin’s had this done fifteen times so you’ll be just fine”…it’s clearly no picnic  but she gulped it down while I wiped a silent tear away from her face. During the next nine hours they pumped  a stomach draining drug in and four litres of this foul mixture. She was miserable as she kept choking on the tube with her abdomen bloating up  – and the very worse she did was growl at me.

The nurses were stalwarts and bloody brilliant. I handed them one cardboard bowl after another and they obligingly took it way to measure and sift through, looking for evidence. If only they were panning for gold.  You’d think there would be  a more advanced way of knowing if you’ve unblocked the drainage system but apparently there isn’t. “Lots of seeds, ” one remarked, unremarkably. I stood looking out of the window onto a grey hospital car park with the cathedral spire in the distance as the rain tipped down and the lightning flashed around. The world goes about its busy business while you are stuck in limbo discussing poo and vomit.  By day six I was going spare. She was keeping water and small amounts of food down. She’d already tripped over her own feet and yanked the cannula out (her mother’s daughter) so I decided that was the portent for us to leave . We needed an escape plan. I had two options; tunnel my way out with the endless recycled cardboard bed pans that just seem to appear in every hospital bog or pack our bags and tell the consultant we were off and that I could look after her at home. Fortunately they agreed to plan B.

So, Belle’s finally home recovering while I try to get her to regain some lost kilos. There’s a bake-off in school later this week and she’s already planned her gluten and dairy free chocolate, marmalade and hazelnut cake. Normality is returning, even down to  a wobbly Calvin who is in a rage with me for  reasons he can’t articulate.  Something to do with me not being around I suspect.

I’ve learnt  a big lesson this week. Just because she doesn’t complain doesn’t mean there isn’t something brewing, that a blocked bowel is deeply unpleasant but has to be sorted one way or the other and that we have learnt the warning signs the hard way. Literally. Go on, laugh. Poo is mostly funny, mostly.

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