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The smallest conversation can mean so much

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A cup of tea cures everything (nearly)
By Petr Kratochvil via Wikimedia Commons

30th December 2010

In the children’s ward at Winchester hospital there’s a room where parents can go if you need a little time out, without children. Equipped with kettles, fridges and toasters, a sofa and some chairs it offers a place to go and calm, or to scream if that’s what you need.

Jane and I went in there to have a cup of tea – tea of course cures all problems momentarily – and to chat about what had happened during the last 24 hours and specifically because the recent Glucagon training session had scared us somewhat. We’d also been told a little about Diabetic ketoacidosis (DKA) and it was all becoming a little too much.

After a few minutes another couple came in to and heard us talking about diabetes. They asked us about what had happened and how we were.

Then they told us a couple of things which, for me at least, helped an awful lot.

Their daughter had type 1 diabetes and was diagnosed many years before. They praised the staff at Winchester and said how good it was that they could if necessary go direct to the diabetes team for anything that was even remotely connected to diabetes. This meant no worry about getting the GP at the local surgery who knew diabetes inside out, or having to explain our situation again and again. This helped a lot.

Some thoughts crossed my mind: why were they here?; what was wrong with their daughter?; just how often do they find themselves back in hospital with her?

Somehow I managed to get the answer to all these questions without even asking as they sought to calm the worries they could clearly see written all over our faces.

“This is the first time our daughter has been back in hospital since being diagnosed, she’s just having a fever and we’ve found it difficult getting her blood glucose levels down. We called the hospital and they said ‘don’t worry, just bring her in and we’ll check her.’.”.

They probably never knew how much their words reassured us.

 

Does this mean I can’t go to India anymore?

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Ladakh, India
By Jochen Westermann via Wikimedia Commons

One of the things they did as soon as Amy was diagnosed was to give her a pen and a pad, so that she could write down any question that popped into her head. In the next 24 hours many questions were written down but there was one that surprised me, pleased and relieved a personal doubt I’d given myself.

“Does this mean I can’t go to India anymore?”

We’d been planning a trip to India, our second family trip there and it was going to be a big one: one month away and visiting the roof of the world, the Himalayas and the regions near by. The centre point would be Ladakh and a two day coach trip through the Himalayas from Manali to Leh. I’d been planning this for months, reading for hours a day and I was just about to buy the flight tickets.

As soon as Amy was diagnosed and when I had a few minutes to myself I thought about the trip and one thing made me decide we wouldn’t go, we shouldn’t go, we couldn’t go. The trip to Leh in Ladakh goes over mountain passes as high as 5300m and at such heights Acute Mountain Sickness (AMS) can be a real problem which can prove fatal if not treated quickly.

Dr Google told me one of the preventative treatments is to drink sugary drinks.
Sugary drinks + diabetes + risk of AMS = no way am I doing that.
(It turns out Dr Google was once again wrong but I only found this out many months later.)

When Amy read out the questions she’d written down I couldn’t believe that with everything currently going on she was worried about the trip. It was at that point I made a promise to myself never to let diabetes stop us doing something we wanted to do, to never let the ‘it’s easier not to do it’ attitude take control, as long as we weren’t going to be reckless. With recklessness in mind and because of my limited knowledge of AMS and even more limited knowledge of diabetes we decided to skip Ladakh and go elsewhere.

What resulted was a 2700 mile backpacking trip using overnight and daytime trains, over four weeks, from Amritsar in the north, to Goa. We prepared for the trip with our recently learned diabetes knowledge and with the hospital’s email addresses and phone numbers close at hand. Everything went very well and whilst we had a few diabetes related problems it never stopped us from doing what we all wanted to do.

But we never would have gone if Amy hadn’t had asked that question.

You can find out more about that trip by reading our Monsoon Meandering blog.

 

All aboard the diabetes coach

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By Feliciano Guimarães via Wikimedia Commons

On the 29th December 2010 Amy boarded the type 1 diabetes coach – destination unknown – and we all joined her. Luckily we can get off for a breather whenever we please, unfortunately, she can’t.

We were lucky that Amy didn’t go for too long before being diagnosed; she was only 22 mmol/l when admitted to hospital and whilst she’d lost a fair bit of weight she wasn’t very dehydrated and didn’t need to be placed on a drip. Afterwards, we estimated that she’d lost one stone (14lbs, 6.4kg) and how we didn’t spot her weight loss is a mystery to us all.

Come the next day – New Year’s Eve-Eve – life seemed completely different. Emilia and I went to the hospital to find two tired people who’d got some sleep inbetween the tears. Amy look bright, so much better than the day before and spent time talking with her sister whilst Jane and I spoke with the DSN about everything we needed to know for the next couple of weeks.

Amy had been given a pad and a pen to write down any questions she had. I took one look and was amazed the things that mattered to her to most. First on the list was ‘does this mean I can’t go to India anymore?, followed by quite a few more – see First questions from a newly diagnosed diabetic.

Whilst Amy and Emilia played some games on the hospital bed Jane and I were taken aside for the (almost freaked us out) ‘what to do if your kid doesn’t wake up training session‘.

Later we met with the dietician and had further chats with the nurses and doctor.

The quality of care from the moment we arrived at Sophie’s Place had been impeccable.

 

 

The ‘What to do if your kid doesn’t wake up’ training session

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Glucagon
Glucagon
By Intropin via Wikimedia Commons

Oh. My. God.
One day you’re told your child has a serious illness and the next you’re being told what to do if they don’t wake up. It’s been a hard 24 hours.

30th December 2010, just after lunch:

Amy was eager to get home as soon as possible, to get things back to normal. We weren’t so sure. In some ways it was no different to when Emilia was born, we wanted to get out of the hospital as soon as possible; we wanted to stay there for our own security.

One of Winchester’s superb DSNs said to Jane and I that she needed to show us how to do something and that perhaps we should do it away from Amy. It was call a good call, whereas my suggestion of the ‘away from Amy’ place being the vacant bed next to her with the curtain around it, probably wasn’t.

Sat on that bed, with the (not-quite-sound-isolating) curtain around us, the DSN explained about severe hypos and how to use the Glucogel.

And then she did it. She got out the Glucagon kit, Jane’s worst nightmare.

The DSN realised that this wasn’t going to be our favourite subject and dealt with us very well, calmly and professionally but we had no chance of playing truant from this lesson. We understood the need to understand.

We each had a kit, with its bright orange case, its needle and its vial. We followed the instructions and all went well. We felt confident and did it again.

I hope I never do it again.

Diagnosis – the first injection

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Novopen, made by Novo Nordisk

After being told Amy had type 1 diabetes we were given some time to be together before one of the wonderful DSNs came back to enquire whether Amy was hungry as it was now dinner time. She was hungry, as she had been for the last couple of weeks.

Her dinner order was taken and it surprised me that she was immediately offered what we call ‘weekday food’ or more to the point ‘crappy food’, consisting of things like Smilies, which most 10 year olds like Amy adore. Of course I had the common misinformed opinion that type 1’s couldn’t eat certain foods and I guessed ‘crappy food’ fitted that bill.

We were transferred to the room which was to become Amy and Jane’s room for the night and a second DSN came in, saying that dinner would be ready soon and Amy needed insulin. It was all handled very, very well, with calmness, control and bucket loads of support from the DSNs. I really liked how everyone focused on talking to Amy, not the parents; it made complete sense but I’d rarely witnessed this before.

Then the horrible question came from the DSN: “Amy, who would you like to do your injection?”. I shuffled forward in my chair expecting to do it – remembering Amy’s fear of needles and Jane’s fear of blood – before I was stunned by Amy’s response.

“If I’m going to have to do this for the rest of my life I might as well start now.”

Waves of amazement preceded waves of pride which preceded waves of tears.

It was quite a slow process but she did it. I was so proud.

Diagnosis – a Father’s viewpoint

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Male symbol mixed with Diabetes symbol

Whenever I think back to Amy’s diagnosis there’s a part of me which harbours a nagging doubt about whether a particular event played any part in the start of the autoimmune destruction of Amy’s pancreas. I know what the doctor’s say, that it just happens and you can’t do anything to stop it, but surely they’re wrong: if a person doesn’t get ill in the first place the autoimmune system won’t attack the pancreas. I guess we’ll never actually know until they pinpoint exactly the cause of type 1 diabetes.

Amy had been ill with the usual cold/man-flu/call-it-what-you-will which afflicts most people as soon as kids go back to school, the days get colder and the heating gets switched on. I had tickets for her and me to go and see her first ever gig, the dance act Pendulum at the BIC in Bournemouth on the 7th December 2010. During the week before with Amy still suffering we debated on whether or not she should go but I put my foot down and insisted it was only a cold. If you’ve never been to a Pendulum gig watch this and you’ll understand just how hot you get – by the end of the evening we were completely soaked (I know, euw!). It was a late night out for Amy so to help her stay awake we bought and consumed lots of her favourite orange fizzy drink. It was full on sugar. She was still quite poorly a few days later.

Back to the diagnosis story.

On the 28th December 2010 Emilia and I went to see Southampton FC demolish Huddersfield 4-1 and returned in bouyant mood to hear about Jane and Amy’s shopping trip and the impending visit to the Doctor. Diabetes was briefly discussed and a quick Google confirmed what I already knew, that if Amy had diabetes it was type 1 and that meant injections for my little girl who has a fear of needles. I was devastated at that possibility.

The next day Jane and Amy went to the doctors – read the Diagnosis post – whilst Emilia and I stayed at home. When Amy went to see her friend about the party Emilia and I stayed at home and that’s when the phone rang.

I took the call which said we needed to go to the hospital that afternoon, at 3pm. Emilia had stuff to do and didn’t want to come to something that was a routine appointment so I (somewhat harshly) told her the reality of what the visit was likely to mean and the daily injections which Amy would have to endure. You don’t get a call back so quickly if everything’s okay.

During lunch I watched Jane, she seemed so calm, I couldn’t understand how. We left for the hospital, totally unprepared for an overnight stay, they could have warned us.

In the consultation room we all sat down as the DSN spoke to us. I could see it in her eyes already, clearly breaking news like this didn’t come any easier through repetition, and I just waited for the words ‘type 1 diabetes’. I looked at Amy and Jane and there wasn’t much of a reaction; Emilia, like myself, looked full of tears, as did the DSN.

The next hour or two was a blur. I’ve no recollection of what happened next.

It was dinner time and Amy needed to inject insulin, or bolus as it’s really called, and she opted to do it herself. I was so proud, she was only 10.

Emilia and I left to go and get some pyjamas for Amy which meant a trip back home. We knew that the local Marks and Spencer’s would be open so we decided to buy Amy some next pyjamas as a treat. After some food and back at the hospital and Amy seemed okay but had clearly shed a few tears. I gave some food to Jane, spent some time cuddling and talking and left my little girl and her Mum to spend the night in hospital.

Diagnosis – 29th December 2010

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Amy was diagnosed with type 1 diabetes on the 29th December 2010, aged 10. It was an open and shut case, no possibility of it being anything else.

When I look back now I can see that she displayed many, if not all, of the classic signs of someone with type 1 diabetes. Of course, back then we didn’t what they were or what to look for.

STOP (for a moment): Do you know the classic signs of someone with undiagnosed type 1 diabetes? If not, please take some time to view this excellent video by Diabetes UK and JDRF.

httpvh://www.youtube.com/watch?v=tYlQTylh_0M&feature=plcp

The day before, Amy and Jane had gone shopping but just before going Amy drank a lot of water. In the shopping centre she needed the toilet, then said she was very thirsty, she was trapped in a circle of constant drinking and urinating, a first circle of blue. A classic sign; we didn’t know.

Clearly something wasn’t right.

Jane had previously spoken with one of our good friends who mentioned the possibility of diabetes but it wasn’t until Amy started drinking pints of water that Jane recalled the conversation. The appointment was booked for the 29th at 10am, a few hours before Amy was due to go to her best friend’s birthday party.

Our doctor didn’t need time to ponder the options and after testing for ketones and her blood glucose level he called the hospital quickly, saying that they’d call us if we needed to go in, but he’d see if any visit could be postponed until the 30th so Amy could attend the party. Afterwards, Jane and Amy went to visit the birthday girl just to let her know that she might come, she might not.

A few minutes later that bloody phone rang. My heart sank.

At the Royal Hampshire County Hospital in Winchester hospital we went into Sophie’s Place, an area created by the charity Sophie’s Appeal in memory of little Sophie Barringer who lost her life to Wilm’s Disease in December 2004, aged six. Jane was her teacher.

A nurse did another few tests and discussed some personal history, asked about Amy’s symptoms and checked her blood glucose again. We were led into a consultation room by the DSN (diabetes specialist nurse) who started chatting with us, but at the time I felt like it was small talk, just some calm before the storm.

Then a word we didn’t want to hear was spoken, it started with ‘D’, it ended with tears.

Amy didn’t know what it really meant. Jane didn’t know what it really meant. I glanced at Emilia, we both knew exactly what it meant. I glanced at the DSN, her eyes were watering.