It’s taken this long… Back in November, two medical teams had called up concerns over Little Man’s health, feeling strongly that there was a gastro problem that needed investigating. The tube weaning team had called their efforts to a close due to “dangerous” weight loss, and the endocrinologist had stopped the growth hormone treatment for the same reason. I’m not being dramatic, I’m quoting what doctors said to me. Of course, the word “dangerous” may be spoken, but it is rarely written in a report. And so when I relay what I have been told to others who look after Little Man, things break down rapidly if those others stop trusting me. (That is for another time, another season… trust has been in very short supply for the last few months.)
So… in November, the endocrinologist referred Little Man back to the gastro-enterologist whom we had not seen for three years… why? Goodness only knows: with so many specialist doctors involved in his life, we regularly fall through gaps, and I do not always chase everything up. On the whole, if things are stable, I let them be. Unfortunately, when he has not been seen for a while, the system requires a re-boot in the form of a referral letter. As usual, the letter was lost, and it was up to me to make several phone calls in the following months to ensure that the referral went through and an appointment was finally made.
It’s unfortunate that in the meantime so much in Little Man’s day to day life began to depend on medical reports. Anything that I as his mother report is now deemed irrelevant unless backed up by a medical report. The frustration this engenders has me stymied when I try to express it… I’m hoping that inspiration will hit me and I suspect that I will pick up my little pencil and create some sort of drawing, but for now, the page remains blank.
Anyhow!!! We are now at the beginning of June and have finally seen a very busy gastro-enterologist. It was a slightly frustrating appointment, an hour later than scheduled (and Little Man has reached an age where his patience for medical appointments is at an all-time low), with a doctor who clearly was rushed off her feet. To have her look at charts and suggest that my son is overweight is infuriating, and I hope to clarify at the very least the choice of words. Most people who see him describe him as skinny, and his BMI is normal. However, his head is rather large, and I do know that his weight is significantly closer to the “norm” for his age than his height. But please, look at a child before using language like that. Ho hum… following a discussion with a nurse, I suspect we will have a phone conversation to clarify that little chestnut!!
There was a very good point to this meeting. I’d have loved more time to discuss my thoughts and concerns – I’ve done a lot of reading and thinking and would like to talk with an expert about the possible issues, but actually what we need is information. And the first thing that needs to be done is to go look at what’s going on inside that little body. I was very impressed that once the doctor decided that we needed to do a gastroscopy and a colonoscopy, we were sent immediately to the appropriate ward to meet a nurse and discuss admission. Not only that, but we already have a date!!! Mid July, we will be heading up to London for those tests, including biopsies which will hopefully give us some answers and some idea of the direction needed to help him.
The nurse was quite quite lovely! As we went through the normal pre-procedure questions, she mentioned more than once that Little Man was quite complex and that she would have to talk to a few doctors to ensure his safety. This may mean more tests before the oscopies, but for me it pointed out once more that my description of Little Man and his needs is not exaggerated! She plans to speak to the cardiologist and expects an echo and ECG before the procedure. She needs to speak to the haematologist to discuss his bleeding issues. She was keen to hear my thoughts about what I hoped would happen, which gave me an opportunity to voice some of the questions I’d been unable to raise in my appointment with the doctor. Sifting through Little Man’s notes is going to take her quite some time, but I came away feeling very reassured that his needs were being taken very seriously.
It was a long day, with a little boy who is becoming ever more fed up of hospital visits. But there were lovely highlights:
We bumped into Dominic and his mum… visit them over on www.justbringthechocolate.com, they are an inspirational family and one we met through the amazing charity www.postpals.co.uk. The boys had such a giggle, comparing wheelchairs and playing on a tablet. It was a joy to listen to them just get down and chat and play, despite only ever having met once before. It was also really lovely to meet up with a mum whose writing is a source of huge inspiration to me, and whom I follow largely through her blog and facebook.
Thanks to our chat with Dominic, we were a little late to the ward… Serendipity strikes again: as we arrived, Dr Mattie was waiting for the lift with us! Dr Mattie is a clown doctor, the first (surprisingly) we have met at Great Ormond Street, and he absolutely lifted Little Man’s mood! The red nose was wonderful, as were the flashing shoes. Little Man was left with stickers galore and a red nose of his own… but the best gift was the smile!! The Theodora Children’s Trust has to be one of the most uplifting organisations I’ve heard of, and this link to their facebook page shows a photo of the Dr Mattie Little Man met today!!! How exciting, exhilarating, wonderful at the end of a day of boredom, overheating and heading into a discussion of needles to come.
Little Man is rather pleased that he will earn a pound coin for having a cannula, even if he is asleep when it’s inserted – oh the silver linings we have to find to help our Littles… Similarly, he thoroughly enjoyed his chips (thank you McDonalds) on the train ride home! The tears that well up at the mere mention of needles mean that we will do the blood tests at our local hospital, with the help of giggle gas. Luckily, the nurses locally have really reacted well at the realisation that Little Man is now in the throes of a real needle phobia, and that giggle gas is currently the key to helping him. A great friend of mine is due to give a talk about this topic, and I thoroughly recommend her blog… go there now!! It’s over at Coke Floats and Chemo and has a way of lifting you above the mud that you may be mired in. Her work with doctors will, I’m sure, help little boys and girls like my Little Man, who grown into bigger boys and girls who are less afraid of doctors and needles than they would have been without her.
We’re home now, and he’s asleep – it didn’t take long after such a day!! So it’s going to be time to get a bottle of Mummy’s best home made blend, plug it into the pump at one end, and into the boy at the other, and head to bed myself!! Here’s to finding some answers at long last!