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.
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!
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.
- My boy is eating real food for the first time since May (afeedersdigest.wordpress.com)
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.
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.
Calvin’s specialist allergy dietitian, Tanya Wright, is a secret magician. She magics up delicious recipes in spite of them missing most standard ingredients. Tanya has kindly shared her very own bread recipe after practising and perfecting this one for months. So here it is ….. bread, free from MILK, EGG, SOYA, WHEAT, GLUTEN, CORN, OATS & RICE. Thanks Tanya, this will help lots of people out there with multiple food allergies.
Do not use a breadmaker or whisk or food processor…
75g tapioca flour (from healthfood shop)
220g potato starch ( Do not use potato flour)
55g ground almonds
2 teaspoons xantham gum
2 teaspoons sugar
14g dried yeast ( Allinsons/ Doves Farm – there are lots out there)
220mls warm water
2 tablespoons olive oil
Fresh or dried rosemary and sea salt
- Mix all dry ingredients
- Mix water and oil
- Add to the dry ingredients
- Mix to a cake like texture mixture
- Spread on a greased baking tray
- Brush top with olive oil
- Sprinkle on salt and herbs
- Cook 200c for 25 minutes
- Cut when cool
It’s so unlike me to have been so quiet with my blog recently, as I’m not known for my mouse-like qualities. This post is, I’m afraid, all about, me, me, me. Roald Dahl would be proud of my spoilt child persona. I spent a week pleasing myself; celebrating my 39th Birthday, walking the Malvern Hills with my mum and then disappearing for two days to visit girlfriends where we used to live. I can’t remember the last time I called time on my responsibilities. It was all planned, don’t worry, I didn’t abandon my family and do a midnight flit. I left lists, instructions and food. When I came home briefly from my three hour tramp up and down the glorious Malvern Hills, my toddler had upended and liberally sprinkled all, and I mean ALL, his toys all over the sitting room, clothes were everywhere, washing-up piled high. Lectures were dispensed , I barked some orders , packed my bags, felt guilty, closed the door on the mayhem and drove two hours to see dear friends.
I laughed and laughed, and sometimes cried, for two days. There’s nothing quite like really good friends who welcome you back, listen patiently and kindly let me share my news and let me hear theirs. Some of us were having coffee and I was explaining how low I felt earlier in the Summer and how out of control I felt about Calvin’s illness and how I found myself in unfamiliar territory – exhausted and doubting my abilities as a mum and a wife . My emotions took me by surprise, I hadn’t realised I was still upset about so much. The wonderful thing about girlfriends is they have no expectations, bucket loads of empathy and they all reminded me I AM doing a good job of coping, in spite of all the challenges.
Until Calvin’s illness really took hold a few years ago, I had a career and a busy job which I enjoyed but found tough to juggle with family life. Being a journalist was part of my identity, part of me, part of what I had worked so hard to achieve. When I had to leave it behind, I thought I’d better make the best job I could of being a mum and rising to the challenge of Calvin’s illness. I think most women I know would do the same. I know I’m one of an army of mothers and fathers who face tough times, draw on their reserves and put their family’s needs ahead of their own. It’s instinctive. It’s human nature. It’s unsurprising. It’s what animals are pre-programmed to do. Protect your young, fight for them and nurture them with all your might – there’s no contest between me and my own. Sure, I resent the intrusion Calvin’s illness has made into our lives. Of course I wouldn’t have chosen this path but I’m treading it nonetheless. I’ve got to get on with it and make the best of it. I may not relish it it but I do accept that one encounters curve balls in life and it’s how you catch them that counts. How do you conduct yourself under extreme duress? I’m really not sure other than to muddle through. People ”cope” all the time for a multitude of reasons. I’m no different from many, many others.
I find myself pondering my life and the surprising direction it has taken. When I’m changing a colostomy bag, ordering more medicine, making a feed up, at another meeting with school, welcoming in the community nurses on a daily basis or comforting a small boy , I do wonder how it’s come to this. Sometimes I muse on how my world has shrunk and I wonder if I’m at risk of becoming invisible and boring. These thoughts make me neither sad or angry. I’m observing these feelings grow and keep wondering how I’m going to find my direction again. I want to work again, I want my horizons to expand once more, I want to be good at a job that doesn’t involve caring for someone I love, I want to use my brain again, I want to find my energy and my direction. Too much to ask? For now – probably, but soon, bring it on. My inner compass keeps changing direction. At the moment I’m still tethered to my pressing responsibilities at home, but perhaps there’s an unexplored path I can take when Calvin starts to improve that will satisfy my wanderlust and my frustrations.
Have I disappeared in the last few years? Have I replaced the real me with a projecton of coping and capability when in reality I’m paddling like crazy, swan-like, under the surface? I don’t know. I do think it’s terribly easy to feel lost so I try to take pleasure from small things, say my thanks for what is good, keep trying to accept what has happened with a good grace and turn it into something positive. There’s a part of me that is still emerging from a chrysalis, wanting to burst out and fly with something else. I start volunteering for a national charity next week. They posted an enticing job advert some months ago which I read while Calvin was parked in hospital, yet again. I looked and looked at it but came to the inevitable conclusion I could not possibly commit. Employers can only be so tolerant when you have to keep going to paediatric appointments, if you get called from school or children with compromised immune systems keep catching everything going. A wise friend planted a seed in my mind so I wrote to them offering some of my professional time for free. The charity responded enthusiastically and I start sometime later this month. I can’t wait. Ironically it’s a charity that helps sick children. Funny how one door closes and another one can sometimes open.
- A funny old week (afeedersdigest.wordpress.com)
- My Little Boy Scout (afeedersdigest.wordpress.com)
- My boy is eating real food for the first time since May (afeedersdigest.wordpress.com)
- Malvern Hills British Camp (mountainmananddog.wordpress.com)
I’m starting to think I might actually pull this off. I have a tendency to bite off more than I can chew when I plot a fundraising Do (so sorry; ironic – and cheesy – food idioms coming up). Ok, I have to use my noodle, spice the event up, sell the tickets like hot cakes to , in a nutshell, bring home the bacon for the charities we’re supporting. And this is all for one of the apples of my eye – my nine year old son who I think is an all round good egg, but who has an illness that his doctors, who are the cream of the crop, find a hard nut to crack. Eosinophilic diseases, Ehlers Danlos, Mast Cell disorders, rare bowel diseases, gut allergies….they are all frequently misdiagnosed, misunderstood hot potatoes and have all been mentioned at various points along our five year journey since diagnosis. There’s no point crying over spilled milk but I can try and make a difference by throwing a bloody good fundraiser.
The only theme I could come up with was The Airline Party, as a nod to Calvin’s Dad who wears a viscose uniform and flies passengers for a commercial airline. Venue booked. Two bands booked, including a fantastic Dixie band. Chicken or beef curry being ordered. Boarding passes on their way from the printer. In-flight entertainment booked. Trying to get my hands on condiment sachets, bags of nuts, small fizzy drink cans, drinks trolleys, air hostess hats, bing bong sound fx, raffle prizes, envelopes for foreign coins, the odd sick bag and safety demo equipment. Duty free bar prices agreed, drink doilies have to be sourced and horrible little packs of butter and rubber cheese have to be out there somewhere. Any airline props anyone?
The lion’s share of monies raised will be given to Calvin’s doctors at the world famous Great Ormond Street Hospital in London into their gene research project for rare childhood bowel diseases. We are also supporting two small British charities, FABED and Breakaway, who support families like us and children with bowel and/or bladder diversion/ dysfunction. If you want to support what we’re doing then please leave a comment and I’ll send you our fundraising page or you can donate to the three charities yourself. For GOSH Children’s Charity remember to specify you want your money to go to the gene research project being run by the gastro team. Their research will one day benefit children from around the world suffering with these illnesses.
I know people are often very generous and are always being asked to donate but writing about these illnesses is just as much about raising awareness, not just funds. If this is important to you or you understand the impact these illnesses have on adults, then imagine what it is like for children and their families. Please support them if you can. Research into bowel diseases is sadly so often overlooked and not talked about. Our Airline party is just one small and light-hearted way to try and change those misconceptions, as well as giving our guests a great night out. I’m not quite ready for take-off but at least my flight planning is filed and I’m working on my check list!
Today was a milestone. After seeing Calvin’s specialist dietitian, Tanya Wright, he’s been given permission to eat proper food for the first time in months. I don’t think he could quite believe it. Although he was grumpy about being at the appointment he actually talked about which foods he might like to try and which ones make him feel sick just thinking about them. Believe you me , that is progress. He even picked up one of Tanya’s published recipe books and started to look at pictures of food, without getting upset. I could have fallen off my chair. Little by little he’s going to taste and try small amounts of agreed foods. His usual allergies (wheat, dairy, egg ,soya, rice and maize) are still a no-no, he’s also going to avoid potato, foods with lots of complex ingredients like my home made cakes, seeds, grains, oats and cereals – just for the moment.
You know, I started to write “we’re avoiding….”, when it’s actually just him but it feels like ”us” because I have lived and breathed all my children’s allergies for so many years it feels as though it’s happening to me too. It’s very strange but I think any parent who has to buy, cook and feed their allergic child will understand how much you invest in trying to get them to eat and to keep them safe and well. No wonder I go to bed sourcing different ingredients on my ipad, surrounded by recipe books and magazines for inspiration.
It was fascinating watching Calvin agree which foods he might like to taste and try in small amounts. He dipped in and out of engaging with the conversation but at least he was a little bit interested and had some strong ideas of his own. I think Tanya’s fudge recipe involving marshmallows and Pure sunflower margarine was also discussed at some point. I’m also going to try and make him pancakes just with gram flour and water and dry-fry them, just so he’s got something to dip into seedless jam, almond butter and marmite.
I scooted out on a late night shop to stock up on some of the foods Calvin’s willing to try over the next few weeks; marmite, almond salted butter (fortunately no nut allergies here!), Plamil vegan chocolate drops, Ribena, mango juice, fresh mango, chocolate coconut milk, vegetable crisps, M & S sausages and seedless jam. He said he’s going to try the Booja Booja Hunky Punky chocolate for breakfast, which was the last food he was tolerating before he stopped eating and was given a nasal gastric tube and elemental feed.
The master plan is to continue with the feed as normal and wait and see what happens to his nausea and reflux and whether he can overcome the off-putting physical symptoms he struggles with. It will be fascinating to see how his brain copes around food once he begins cognitive behavioural therapy in four weeks time and whether it makes a significant difference to his body tolerating normal food and even water.
So, this is new territory for us. An Awfully Big Adventure. My biggest hope is that he is able to join in with eating again and discover its pleasures and maybe, maybe, one day be able to eat some of the foods he’s been allergic to for years. My biggest fear is that the nausea won’t retreat and we become stuck in no-man’s land between food and elemental nutrition and that I will be spending hours and hours adapting recipes and hoping the food I make him won’t make him feel ill. Who knows, but today was undoubtedly a giant leap forward. I’m sure it won’t be linear progress but I’m certain there will be many more steps forward than back. I watched him contentedly eat a handful of Plamil chocolate drops tonight and it was honestly joyful to watch that boy chewing again. It was a start and I can’t ask for more.
- Feeding the Allergic Child: Guest blog spot by specialist dietitianTanya Wright (afeedersdigest.wordpress.com)
- Guest blog spot from leading allergy dietitian, Tanya Wright (afeedersdigest.wordpress.com)
- Siblings and Food Allergies (nutallergycomm.wordpress.com)
- Food allergies nothing to sneeze at (readingeagle.com)
- Mindful Eating (happyhealthy365.wordpress.com)