Blow wind, blow

storm clouds

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.

About mumannie123

mum, wife (when I remember), journalist, Queen of poo, self taught allergy cook, totally unqualified nurse, likes to fundraise for research and raise awareness into rare childhood bowel diseases, self-appointed expert on accessing education and healthcare for my child, wants to signpost for others who may be struggling, thinks her jokes are funny even if no-one else does.

Posted on January 5, 2014, in Bunged up bowel, Colostomy, Emotional rollercoaster, Eosinophilic Disorders, Tube Feeding and tagged , , , , , , , , , , , , , , , , , , . Bookmark the permalink. 2 Comments.

  1. You are an amazing mother. No, you probably don’t need to hear that again — someone is no doubt always saying it. But to keep your head while being whipsawed; to get the care your kids need with insistence. To fight for them and to also maintain some semblance of a family … well, I’m always in awe.

    I don’t know if this will help, but years following my colostomy (’82/83) I developed “bile acid malabsorption.” Basicaly I poo battery acid. For several years I’ve been taking colestipol, an anti-cholesterol medicine that absorbs acid. It has helped a whole lot (I do not have a stoma though, they pulled my ileum through to my anus — which is what hurts).

    Hugs from someone in another continent who wishes you all a 2014 that starts getting healthier and healthier — mind and bodies.

  2. Just want to send a virtual hug – to each of you – and wish you all the strength, stamina, inspiration and humour you need in 2014. You have come a long way, and you Hang on in there xxWILL get through all of this. You are a wonderful inspiration to many of us.

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