Tuesday, 8 October 2013

Lucy diagnosed with Type 1 Diabetes (3rd Sept 2012)

There's a song called 'Papa was a Rolling Stone', by the Temptations which begins with the words ''It was the Third of September; that day I'll always remember, 'cause that was the day that {Lucy's pancreas} died.'' (with some artistic licence going on there!) It sums up pretty well how we view the 3rd September 2012 - it feels like a momentous day for our family, Lucy in particular.

The day started with us all going out to see Scott's college mini bus. He had implemented a new system of free buses for students to his college, and this was the first day of them being in use. Scott wanted to have a back-up mini bus, because they had no way of knowing how full the buses would be, and he didn't want any stranded students! He didn't end up being needed, but the new bus system has worked out really well.

The kids were off school still, and Lucy had a Doctor's appointment in the morning.
On Saturday 1st September, we had been hanging around at home, and Lucy said she felt tired again. I said we should try and figure out why she was so tired, because she had complained of it quite a bit recently. I asked if she wasn't sleeping very well, and if her bed was comfortable enough, and she said that she was going to the toilet in the night. I asked why, because she's never done that, even as a young child, and she said she'd been feeling thirsty and drinking more. I remembered seeing a poster in Lloyds Chemist's window years ago, that listed the symptoms of Diabetes - tired, feeling thirsty, needing the toilet more etc, and so I said we should take Lucy to the Doctors, just to rule out Diabetes, and I got her an appointment.

We didn't feel particularly worried, and Scott said he didn't think she would be Diabetic at all. I thought it might be a possibility, because that was what the symptoms pointed to, and the only other things which shared similar symptoms seemed even less likely (Kidney failure, blood loss etc.) I didn't really think about it much over the weekend though.

We had Harry with us for the appointment on Monday morning, and had left Jack and Tom at home. We spent a minute or two describing the symptoms to the Doctor, and I said we'd like to rule out Diabetes. He did a finger prick blood test on Lucy, and straight away said that it looked very likely it was Diabetes - her blood sugars were so high that his machine couldn't even register them, and that we needed to go straight to the hospital. He rang the hospital there and then, and told them to get a bed on a ward ready for Lucy.

We went out to the car, and I rang Scott, and then Jack, telling him and Tom to be ready to go. It's quite strange really, Lucy and I weren't upset or worried, we were more kind of like 'Oh! OK, it is diabetes!' and 'This is rather interesting and new!' Lucy agrees!

We went home, got Jack and Tom, and grabbed some things for them to do, then drove to hospital, where we  met up with Scott. We went straight to one of the children's wards, and Lucy was given a room.
I don't remember hanging around  for very long before Lucy was seen by numerous people. She had some blood samples taken, which were sent off to try and rule out any other possibilities, and we were asked lots of questions, but we were told fairly early on that we were almost definitely looking at Type 1 (Insulin Dependent) Diabetes. Lucy's blood had been tested again, and her blood glucose reading was over 26. The range for people normally is between 4 and 7.

Type 1 Diabetes is where the pancreas is unable to make as much insulin as is needed. Insulin enables glucose in the blood (from what you have just eaten) to be utilized by the body as energy. Glucose (from any sugars/carbohydrates) gets basically trapped in the blood stream, which if left untreated is fatal. There is the common risk though, when you are having to regulate your own blood sugars, of the levels dropping too low, which is also potentially fatal.
We were told that if I hadn't taken Lucy to the Doctor when I did, it wouldn't have been very long before she would have been bought to hospital very ill.

We then met Vicky Surrell, the Diabetes nurse who we have since got to know well! She came in with armfuls of stuff, and that's when our seriously steep learning curve began... I can't even begin to describe the amount of information that was given us - what Type 1 Diabetes is and isn't, how and where to do the blood testing which is done several times a day, how to look after blood testing equipment, how to use all the functions on the monitor, how to record info for every snack/meal, how to do detailed calculations of carbohydrates in food, how to work out carbs for food with no food labels, ratios of carbohydrates to insulin - which differ for each meal, how to compensate for a too high or low blood sugar reading with the next insulin dose, the different types of insulin, how to inject (which is done before every snack and meal with over 15g of carbs), how to time the injections, how to replace needles/insulin vials, how to properly dispose of needles, what to do if Lucy's blood sugars go a bit too high, or way too high, what to do if Lucy's blood sugars go a bit low, or lower still, or extremely low, what to do if Lucy gets ill with something else, how to test for Ketones, how exercise affects things, and stress and hormones, what the HbA1C test is, what check-ups she needs on an ongoing basis, and so on!! And then realising this isn't for the next week or so - this is forever, and that I need to know this stuff, because it's what will keep Lucy alive in the short term, and as healthy as possible in the long term.

It seems that on the internet, the Type 1 Diabetic community deals with it with good humour as much as anything (along with Insulin...) We could relate to plenty of the Pinterest pins, including this one!
Lucy had to have her first injection of insulin fairly quickly after arriving at hospital. Vicky showed her the pen-type needle and told her what to do, and I am proud to say that Lucy did her very first injection by herself (into her stomach), and except for one practice injection which I did later on, she has done all of them herself, with no fuss at all.
At one point Vicky said how well we were doing with everything. It seems that lots of kids, and lots of parents don't take things very well. I felt like I was far too busy to have time for being worried or stressed at present, and Lucy was just taking it in her stride.

Scott had to leave after a bit, once he knew Lucy was OK. The first day back at college is a massive day, and he had to go and take care of some things.
At one point, I had to learn how to give an injection with a big traditional type of syringe, with a nice big needle (this is the one we use if Lucy's blood sugar goes too low, and she's gone unconscious, or is having fits). I was practicing filling up the vial with the liquid, and getting air bubbles out, then injecting into a rubber practice pad, but I wasn't feeling too great myself, having not eaten all day. I was a bit shaky anyway, and somehow ended up catapulting the filled syringe across the room, and it landed with the needle downwards, embedded into one of Lucy's flip-flops, in between two of her toes! We were killing ourselves laughing, and they sent a nurse to go and get me some food, for my low blood sugars!

While all this was going on, the boys were great - I basically ignored them the whole time, and they entertained themselves in 'the teenage room' on the ward.
When Scott came back later, to collect the boys, Harry said 'it's not fair, I wish I had Diabetes!' - I think the teenage room was rather a hit with him!

Once we had got all the initial information, and Lucy's bloods were at better levels, she and I drove home to collect some overnight things, then we spent the night in hospital, just so they could keep an eye on Lucy. I was glad of it because I wanted to make sure I knew what I was doing with regards to everything there was to do at meal times. They bought me in a nice portable bed, and we thought it was great! (Lucy and I both like hospitals!)

Before we came back to the hospital, we stopped off at Lucy's friend, Beatrice's house. Beatrice has been Type 1 Diabetic since she was small, and she was desperate to see Lucy, who had rung her from the hosptial earlier. She was more upset than Lucy. It has been a mixed blessing, Lucy having a Diabetic friend. It meant that Lucy knew some of what was involved, and hasn't been totally isolated, but we have been cautious about having someone else's experience colour Lucy's expectations and experience of everything. Lucy and Beatrice have quite different personalities, but I think Lucy realises this, and that they don't necessarily have to deal with things in the same way.

This is the one photo we have of Lucy in hospital... with her beloved new 'Carbs and Cals' book (it's a useful visual guide to how many carbs are in different portion sizes of hundreds of different kinds of foods, for when you are out for example, and can't accurately weigh your food). Lucy said it was worth getting Diabetes, just to get this book!
The next day, Scott dropped Harry and Tom off at the hospital in the morning on his way to work, and they spent all the time playing in the teenage room again, until Scott picked them up later.

When Lucy and I left hospital, we were both laughing at the ridiculous amount of stuff we had with us - big boxes for the different monitors, injection pens, test strips, huge amounts of paperwork, and the icing on the cake - a massive bight yellow sharps box! We joked that it looked like we were robbing the hospital. 
We stopped off at Tesco on the way home, and stocked up on 'hypo snacks' (high sugar snacks which Lucy has to take when her blood sugar goes below 4 - ie. when she is hypoglycemic. She alternates between Jelly Babies, Skittles, Haribos, fruit juices, glucose tablets etc.) We also bought some more accurate weighing scales.

Jack had gone back to school on the 4th September, but Harry and Tom were still off, and Lucy had the rest of the day off. Everything revolved around Lucy's meals. It took AGES to work out all the carbs in her food, and figure out what her blood test figures meant, and how we had to adjust the insulin dose depending on that, and what the ratio of insulin was to carbs etc, and then triple checking everything, so we didn't kill Lucy by accident! For the first couple of weeks, we had to ring either Vicky, or the Diabetes doctor, Dr. Rajiv Goonetileke, at every meal, so they could help us/check we had worked everything out right. It was wonderful having someone on the end of the phone at any time day or night, who would completely help and support us. Our experience with the NHS through all of this was been simply wonderful.

We also had weekly hospital visits at first, then two-weekly, then monthly, and now (a year on) Lucy has appointments every three months. At the beginning we would go with pages of questions, especially about the adjusting of insulin doses, depending on snacks eaten, and the timing of everything.
The new look of our kitchen!
I drew up my own sheets for the first few weeks, to record all the data - there was another sheet along with this one for recording every single thing Lucy ate. Now that we are more familiar with everything, we don't have all these sheets, just a diary which Lucy copies down all the readings from her blood testing monitor into once every so often, so that we can see the overall patters of things.
The sharps bucket, and hypo treatment box.
Reminder of the calculations for working out the carbohydrates in food.
I had crossed out the 'Keep Calm and Eat A Cupcake' sticker on our fridge to read 'Keep Calm And Take Your B.S'. (Blood Sugar), which Lucy found highly amusing.
We cleared out one of the games shelves, to make room for all Lucy's equipment, and also a shelf in the fridge door, for her different insulin supplies, and emergency Glucagon injection.
Weighing out jelly babies into the right amount for hypo snacks!
The next day, September 5th, was quite a busy day! It was Lucy's first ever day doing Early Morning Seminary (the daily scripture study programme our church does for 14-18 year olds. Scott teaches the lesson by Skype to several students, four mornings and one evening a week.) It was also Harry and Tom's first day back at school. Lucy also went back to school - a day late. I was worried about Lucy being at school so soon, and having to do everything new. I went into her school, and spoke with her head of year and the First Aiders, and made sure they knew she HAD to have her phone with her and be able to use it, etc. Because Beatrice is also Diabetic, the staff were somewhat familiar with what it would involve on Lucy's part (though I don't think most of the teachers would know what to do if she became ill, in spite of being given all the information - her friends are the ones I rely on for that, sadly enough.)
I think we'd done all this by about 10.30am: (Click on picture to see it larger.)
It kind of felt like this for a while!
Lucy and I have often said though, that it must be so much worse when little kids get Diabetes. At least I know Lucy is sensible enough and old enough to be able to work stuff out for herself, and that she won't have all the fluctuations caused by growth hormones etc. (though it doesn't stop me having a permanent worry in the back of my head... if Lucy's blood sugars go too low, she could become confused and not be able to treat herself, and of course there are the long-term complications.) We feel lucky that Lucy was able to have a childhood free from Diabetes.
One week on:
Stuff that is normal now...
(I sometimes feel sad at all the stuff Lucy has to permanently have with her.)

Yep, this frequently happens!
I'm writing this post one year on. (Bit behind on my blog!) We think Lucy is still in the 'honeymoon period', where managing her Diabetes is still easier than it will become, because her body is still producing a little insulin of its own. It is still not an exact science though. Lucy's blood sugars seem to do strange, unpredictable things, and she probably has a hypoglycemic episode a couple of times or more, a week. She is usually able to tell when this is happening because she feels ill and shaky, and we are lucky that she seems able to tell, even when it's not too low.
She has had a few episodes in the night, but they wake her up, and she treats them herself.
Lucy has toyed with the idea of getting an insulin pump, which has a semi-permanent line into someone, so they don't need to keep injecting. She doesn't want one quite yet though.
We are lucky that Lucy has not been really ill so far. I read some experiences of others, when their children were first diagnosed with Diabetes, and it was scary how severely ill some of them were, before they were diagnosed. Lucy never even lost any weight - it was just the feeling thirsty, needing the toilet more often, and feeling more tired.

We are so ridiculously proud of how Lucy has dealt with everything. (Including the fact that this was her first year of GCSE's too!) She doesn't complain, she just takes it as part of her life, and we none of us feel like anything so terrible has happened that we can't all still be happy. Being members of the church, with the eternal perspective which that brings, has been a tremendous blessing. Nothing in the grand scheme of things has got 'broken'! Of course she gets fed up of endless injections and blood testing, and not being able to eat very much spontaneously (eggs are her new best friend - carb free!), and of people's questions and comments (''Did you eat too much sugar as a kid?''... no, in fact she eats more sugar now as hypo treatment!!, ''But you're not fat''...wrong disease! And far from all Type 2 Diabetics are overweight anyway, ''I could never inject myself like that!'' ...yes you could - or you'd die!, ''Can you feel it when you test your blood?'' ...Try sticking a pin in yourself, and see!)
I know that she might not always feel this positive all the time. I can't imagine dealing with the relentlessness of it. For now though, I'm glad it's not getting her down too much.

In the first week or so, Scott and I spent one very somber evening together - reading about the long term effects Diabetes can have, and the complications of things like being pregnant. I've not let myself dwell on these things, as it will do no use, and I refuse to let myself get sentimental and tearful. (I've yet to shed tears over Lucy's Diabetes.) Yes, Lucy is our precious, wonderful, beautiful only daughter, but she is strong, and resilient, and has the gospel, and no-one ever said life would be perfect.

Long term studies show that those people who can maintain good HbA1C levels, are a lot less likely to suffer the long term health problems associated with Diabetes. This is a blood test which in effect looks at how much glucose has stuck to the haemaglobin over the lifespan of the red blood cell (about 8-12 weeks), so the HbA1C tells roughly how high your blood sugars have been on average in the last 8-12 weeks - how well controlled your diabetes is.
Lucy's started off at about 14% (Lucy had some diabetic symptoms as far back as May - she remembers needing the toilet far more often on the European Road Trip, but it would have increased rapidly at the end), then quickly went to 11, then 9, and for most the time now she's been around the 6's. This is really good - her goal is to stay under 7.

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