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A dad's diary of a newly-diagnosed son

When David's son Ed was diagnosed this summer with Type 1 diabetes, he wanted to share his experiences to support other parents. Here, he gives a day-by-day account of what happened - and the emotions that came with it.

Thursday 22 August 2013

"Oh great, bloody hectic day today - need to make sure everyone in the office knows what they are doing - we need to get the marketing out and there's a stack of customers I need to write to.....meeting at 12 and I've got to get to meet Sam and Ed at the doctors at 10 - never going to get everything done!

For once I'm early...Sam's the organised one.....I'll get him checked in then it'll be faster and I can get back to work.  "Edward Whitwam to Dr Fairburns office" - that's us - get everything checked out, sure it will be fine and then I can prep for my 12 O'clock meeting. We had a urine sample with us, just in case. Ed has been drinking a lot, but it’s just a phase, it's been warm and he's never been great at drinking so it’s a good thing really.

The more we explained to the doctor - the drinking, guzzling of pints of water, peeing all the time, the tiredness, he's lost a bit of weigh - hang on a minute, that's a lot when you explain it altogether.....yeah sure it's been going on for a little while but nah he's fine I reckon, just out of sorts.

The doc checked the urine sample and looked at it for a moment "there's definitely sugar in there.....and ketones" Ok......this is sounding like she's thinking what I'm trying not to. Sam’s listening intently and the doc asks if we have any thoughts on what it could be. Well we said the word but I for one expected to hear "no no, just a virus".  It's always a bloody virus - just not when you want it to be "Yes, it's possibly diabetes, so I’ll make an appointment for you at the Hospital and call you shortly to let you know where to go”We thanked the doc and left to pack the bag she advised.

Right, cancel the 12 O’clock, move it to tomorrow, be sorted by then.

Checked into the children’s ward.  Blood test, after blood test after question after question.....they're sticking endless needles in my little boy - it's ok, strong front, everything's ok Ed will be fine.Blood glucose 19 - ok even I know that's not great.  Another test and it's 27 - yeah definitely not good - stay calm stay, positive that's what Ed and Sam need right now.

Best ring the grandparents and let them know I don't know anything....when I get back we are moving to a ward.....wait a minute who said we would need to go to a ward.....it's ok, definitely just a temporary thing.Still not definite.....but wait a minute they did say we were waiting to see the pediatric diabetic consultant next......oh god......no it's fine, everything will be ok.

The consultant asked if we'd been given a diagnosis.....no but being that we were waiting for the diabetic consultant we had started to face up....."Yes, Edward has Type 1 juvenile diabetes"

That seemed to take forever to sink in.....I got it in my head and knew it in my heart.....but no, it's my Bear (he'd been known as bear since he was born) and I don't want him to have diabetes.....I don't want him to have anything. He starts secondary school in two weeks. Keep it together.....it's fine.....everything will be fine.

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The rest of the day was a bit of a blur....consultant came and went a few times.....she was excellent even though she told me things I didn't want to hear. The diabetic nurse started to explain what everything meant and we started to figure what a massive change to our family life this would be.....Lydia and Henry would need to change too.....everything changes! We agreed between us we wanted to be home for the weekend....we made a pact to listen and learn everything we could so we could get home together and get back to normality.....well get back to our new way of living at least.

Lydia, Henry, family and the Grandparents descended......they all mean well......they're just as upset as me.....no how can they be, it's my boy....keep it together it will all be fine. I know they're crying behind Ed, I know they're upset, but I've just got to push it away.....me and Sam have enough to deal with right now I can't take on their upset too. Sam wants to stay at the hospital with Ed tonight.....as much as I want to stay with him right now Sam needs to be there, I get that....she carried him for nine months and she wants to be there.

The docs want to be sure we can all administer Ed's medication.....my turn tonight, I've got to test his blood and then give his bed time insulin......how on earth am I going to purposely stick a needle in my boy......don't think about it, if I want us all back home together just do it.  It was fine, Ed was great....he's really taking this well. I stayed at the hospital until 22.00....went to say good night to Lydia and Henry...they're staying with Grandma tonight....then went home to an empty home.

You know it's not often I need a drink....I often want one...but rarely need one... Tonight I need one, and as I finished my first big glass of red wine and started my second it all really started to come real......this is the day life changes....I'm not sure how....but I know it's going to change.

Friday 23 August 2013

5am.....brilliant.....well might as well get up, at least I got five hours sleep.  First job, walk the dog.....then nip to the office and pick up some work to do between seeing doctors, nurses and dieticians.....the get to the hospital, god I'm tired.

Well at least being up early means I don't have to search for a parking space at the hospital!Sam and Ed are awake when I get there.....they seem on good form....a bit tired but good all the same.  Sam had been woken by the nurse in the night to do Eds blood test.

I'm a wreck today.....feel like the slightest thing will make me cry, Jesus I’m 6ft 4 and 17st – I don’t often, but today…......man up, this is about Ed and getting the family home an back together. We have some breakfast and wait for the first in what seems like an endless visit of doctors and nurses. Lydia and Henry are coming to visit later with grandmas and granddads - Ed wants to see his friends too.

First visit of the day from the consultant......there's so many questions I have, everything she tells me creates another question.....Sam nudges me again reminding me to shut up and let them talk! She's right!We've got friends coming over tomorrow night for my birthday.....we'll cancel, not sure I can cope with it right now......I just want to get home with my family and lock the door behind to protect us all!Ed doesn't want us to cancel....he wants to see his friends, that’s his motivation for getting out of hospital.....I guess it's about him right now.

First visit of the day from the diabetic nurse.....more things to learn about how out life will change and how to manage it.  She wants to talk about Hypos.....I don't because these fill me with an unimaginable fear.....why do I want to know that he could drop unconscious......I don't want to have an emergency injection in my fridge......I don't want to think that one day I might have to rush to the fridge to find the bright orange case.....I tell myself to focus, and learn, it's the only way we will get home.

Sam's amazing, she has her head on today, she is totally focused on learning everything and getting us home......pushing the emotion away.......she doesn't want to cry at everything....at least not yet.The lesson on Hypos is ok....she reminded us many times that it will happen, but severe ones are rare so long as we do things properly. Ed's doing great.....he's taking everything in his stride The dietician asks Ed alot of questions about our normal diet. .I should answer - no, he's old enough to speak for himself and he has to take control of this.  She's pretty happy with what we eat, our diet is pretty good.....couple of changes to make, but nothing major....that's a relief at least we are getting that right!

Ed's due to start high school in two weeks and she says she will go though with him about making the correct choices.....ERRRR WHAT? High school is a big change as it is, he doesn't need someone parading him round the dinner hall telling him what he can and can't eat whilst the whole school looks on.....why not just pin a sign on him saying "I'm a little different".......oh god i'll have to sort this out.......I'll speak to the nurse she'll understand.

Back to the visitors.....we went out to the garden area.....it's nice to get some fresh air. I look across at Ed talking to his friend Sam.......god he looks thin, how did I miss that?  How did I miss all the signs? God I'm a rubbish dad.....I love my family so much but I've let them down.....I should have seen this sooner.  It's obvious now, pint after pint of water, he's been tired, rushing time after time to the toilet.....he even didn't go in the pool one day on holiday....Ed never does that.......STOP…….. this all adds up now, but these things have been happening slowly over a couple of months and beating myself up isn't going to change anything!

Back on the ward everyone's gone....a little quiet time.....time goes slowly when you're sitting waiting.I promise Ed again that I will always be there for him he will never be alone with this....but I know in reality that some times he will be.....I can't be there when he's 18 and out drinking with his fiends, I can't be there when he goes on holiday with his friends, I can't...... ......Stop......one day at a time, I remind myself he is 11.

Last visit of the day from the diabetic nurse, more to learn....this time it's all the medication, testing strips, needles, and everything else we will need.....it's like having a newborn again, all the things we have to remember to take. I talked through my concerns about Ed being walked around the dinner hall at school by the dietician......I shrink to the size of a pea as she explains that they are not in the habit of embarrassing.....they will get a copy of the menu and talk it through with Ed.....ah yes that seems sensible!Ed wants to stay in hospital until he's done his last injection of the day, the earliest we can do it is 20.00....... Just a few more hours until we can get home.

I go to our local pharmacy to check they have the prescription I'm due to pick up tomorrow.....I'm not leaving anything to chance. I know the pharmacist and I explain to him what's happened.....he's got the prescription and promises to always keep in stocks for emergency....then it dawns on my just how much I'm going to be visiting the pharmacy now.Back to the hospital, Sam and Ed are all packed up and ready to go.....an hour and a half until we can get back to the safety of our home and shut the world outside.  Grandma has offered to keep Lydia and Henry with her, but I want, I need my family back together.

We're free to go, packed and saying goodbye to the nurses....they have been great.....and as I get outside to the front of the hospital I dawns on me again that life is different now; but we're are together and so it will be fine

Sam’s tired, we're all tired so we head to bed.....I offer to do the 2am blood test to let Sam sleep....and because I want to check on my boy.

The alarm I set wakes me, but I think I was awake anyway. Bleary eyed I make my way to Eds bedroom and try to gently wake him but he is fast asleep. I did his blood and he never stirred. Glucose levels are still high....I pack his things away and stumble back to bed and start the journey back to sleep……….WAIT A MINUTE.....he was un responsive......he didn't wake up.....I couldn't rouse him - he's having a hypo - how can this be happening so soon; oh god what do I do? It was at this point I gave myself a slap.....his blood glucose was 18....he's not having a hypo, he's a boy fast asleep at 2am just like he should be - I eventually drifted off to sleep."

Read part two of David's diary

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