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 How does one begin to describe watching her in pain, becoming withdrawn, the sleepless nights by her bed, the complexity of malnutrition, the sadness we feel seeing her just existing in a hospital bed and the overwhelming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

 

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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 February 18, 2014, in Bunged up bowel, Tube Feeding, Uncategorized and tagged , , , , , , , , , , , , , , , , , , . Bookmark the permalink. 6 Comments.

  1. What a nightmare, so awful not knowing what the underlying cause is. That’s what has been hardest with Harry’s issues – he didn’t HAVE any until 18 months ago. Poor poor Belle and poor you Annie, you must be totally and utterly exhausted emotionally, physically and mentally. So unfair. Harry has bizarrely gained weight with his gut issues worsening, almost 10 kg in 14 months, he’s finally reached 36.5kg (he’s 12 too).

  2. Beautifully written Annie and we are sending so much love and many, many prayers in yours and Belle’s direction. We’re with you every step of the way and think of you all constantly. Here’s to reaching some answers soon and a return to better health for your beautiful girlie. Rxxx

  3. You keep fighting too. Your love is in every word. I follow your story and Belle’s with the deepest hope that soon all will be well. For all of your children. And then you can, with your husband, breathe and laugh at the normal foibles of children.

  4. Oh Annie, am crying. Amazed that you found the time, energy and emotional strength to write this now. Thank you though for sharing and thinking of you all every day. Much love.
    … stolen pizza, police, SERIOUSLY, can’t wait to hear more on that one!

  5. As I sit at home in Kariba Zimbabwe I read your heart wrenching blog. I will pray for you and hope in some small way my thoughts help. Keep fighting .

  6. It has been so long since you posted – I keep looking out for your updates, but … my thoughts and prayers are with you Annie xxx

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