OurD Tweetchat & A Valuable Lesson

Me again,

I completely missed Tuesday’s OurD Tweetchat, Emily was having a 2.6 hypo & wanting all my attention, so I was MIA to even hear everybody else’s experiences.

I’d never have been able to answer questions on ‘Diabetes & Pharmacy’ in 140 characters.  Not a hope.  It was going to have its own blog post at some point anyway.  I will go into more detail below (mainly in question 3 where I’m bound to drift a small way off the topic.

Question 1 – Have you ever had a problem getting your prescription, anti-diabetic tablets or insulin?

I don’t think we’ve had no more than anyone else.  We actually have an online ordering service around here so we can place an order one evening & they will be dropped to our door.  We don’t have any direct contact with the local pharmacy any more.  The only issues we have is when having to get non-standard items, such as a quantity of ketones strips, or emergency pen supplies when they have expired.

We have had a couple of occasions recently when we have had to go purchase test strips due to failure to deliver however in their defence we really shouldn’t be allowing test strips to run as low as 48 hours supply remaining before re-ordering.

All in all they do a very professional job & make life easy for us.  They are always on the end of a phone late in the day if prescriptions have not been dropped off to let us know if/when they are going to arrive

Question 2 – If you have a regular repeat prescription, has your pharmacy team ever gone out of their way to help you if you had a problem?

We no longer actually deal face to face with the pharmacy (Boots in our case).  We live in a relatively small town and they are the only pharmacy.  For reasons explained below we rather fell out with our pharmacy.

Question 3 – When you (or your child) were diagnosed, were you given enough information about your medicine and BG testing? Has your pharmacy helped?

Here we go.  The fun bit.  It may go on a bit as this question as I say was going to get its own blog post.  There is no one person to blame, there are failings all the way through but the accumulation could have killed Emily.  So I best start at the beginning.

We are going back a couple of years now.  November 2011 to be precise.  Emily had woken up with a reasonable BG, low double figures, not uncommon.  I went to work.  Amy took over, noticing that the insulin was running low anyway she did a full set change & proceeded with the day, corrected, bolused breakfast and went on with the day.

2 hours later, BG was checked & she was even higher, high teens, this was odd.  No real signs of illness, air bubble maybe.  Again Amy corrected.  Emily snacked and went on with her morning.  Next test & we were in the mid 20s.  What was going on!?!  Ketones, 0.1.  So wasn’t her body was registering that Insulin was in her system.

One thing about Diabetes is it is very hard to deal with from your desk at work at times like this.  So I told her to correct again.  These doses were becoming quite hefty.  I was very concerned we were tempting a crash.

Emily had lunch, she was 3, you can’t stop a 3 year old wanting food.  Again it was bolused.  It got to about 1pm & Amy retested – HI.  Ketones 0.1.  This doesn’t make sense.  Again Amy corrected, Emily had now had a full days insulin in corrections alone.

I was becoming tetchy.  Amy wanted to know what was going on.  And the problem was hard to work out while we were separated.  I called our DSN, we didn’t get along (hence why we have now moved clinic, she always knew best or so she thought).  I had to get Amy to talk to her, I couldn’t answer the questions she needed to know, another hour passed, 90 mins, still HI on the pump, another correction.

Then the first error in a catalogue was uncovered.  Well in honest the first 2.  One was by our clinic at diagnosis.  It was possibly seen as non-important information to a family put directly on a pump but I’m telling you now, EVERY PARENT NEEDS THIS INFORMATION AT DIAGNOSIS!

Our DSN had Amy check the vial of Insulin from this morning, was anything different… It’s a bottle of clear liquid.  What is different, was it filled with Vodka?  There’s different insulin?  No-one has mentioned different types of insulin (This is much before the DOC for me, we had no contact with any other diabetics or knowledge of how MDI worked).

The label on the box was the same as always, however underneath the sticker put on by pharmacy once pealed was a purple box, not a blue one.  This is when the panic set in, and not only for us.  We barely knew what it meant but the DSN certainly did & she sounded for the 1st time in our experience worried.  You know what I mean, they take a breath and start talking very slowly and over calmly.  She wasn’t fooling anyone.  The very clear message was get her into hospital immediately.

So what had been discovered, Emily’s pump is filled with Apidra, and this stuff certainly Apidra, however she uses Apridra Glulisine, this was Apridra Glargine – More commonly known to everyone reading as Lantus & alike.  Emily was at this time on approx. 2 units of basal a day.  We had given her 12 units of the Glargine that day so far.

It had been a mis-pick at the pharmacy, and then incorrectly checked by the 2nd pharmacist.  Another poor practice was that the printed sticker was then wrapped around the box covering most of it (as you know these boxes are rather small and you could easily cover most of it).

Yes I admit we could have questioned the different colour box, but in all honesty we have all seen the packaging that our supplies come in change over the years, so it wasn’t a big surprise to see it in a different shade.

So Amy came & collected me from work en-route to the hospital, to this day this is still the only time I have had to use a pen.  I took Emily to the other room at work and battled to inject her with a correction of her fast acting insulin (on the advice of our DSN).  It isn’t something I would like to do often, I just hoped it had worked.  To be fair the last time I was shown how to inject was over a year before, the week after she was diagnosed during a crash course with our DSN.

Amy bombed it to the hospital.  When we arrived there was an entire team waiting for us.  Emily was a bit perplexed by it all.  She was feeling fine.  Amy went with Emily, I was pulled aside by our DSN, specialist & doctors and asked to relay everything from today.  Then the doctor said ‘so you’ve given her all her daily basal insulin?  2 units’… ‘No, her daily total insulin, 12 units, and I’ve just given 3 units via a pen’.

I have never seen someone who isn’t ill go so grey in front of my eyes.  Not really the reassuring smile I was looking for.

BG was taken, we had a figure again finally.  They had Emily in a bed, working out a plan of action, her pump was removed.  Something she really couldn’t understand.  I think she thought she was cured!  All we were told was that nothing would happen at the moment.  They expected things to really kick off in the small hours of the morning (what an ideal time for a BG crash).  It was only 4pm!  That’s a long time to hang around waiting for something bad to happen.

Over the next few we were given very limited information as to what Emily had been given, looking back now I understand but then it was very different.  All we understood was Emily needed blood readings every hour and that the insulin she’d had would keep dropping her blood for several hours afterwards.  It was all very vague.

I remember her being allowed to eat anything she wanted, and having no bolus to cover it.  The hospital had decided the best way ahead was to get her BG as high as possible.  And that we did, it was off the chart.  We had no idea just how high.  But it was better than being low.

Amy said her goodnights at 8pm, trying to hold herself together, she doesn’t do the overnight stays, that’s my area as previously mentioned.  Emily settled down for the night after watching a DVD and went to sleep.  Was a horrible time alone, curtain drawn, sitting in a dark, cold hospital chair.  The nurses were lovely as always.  I went into my auto-pilot, on the our every hour checking her levels.

Then it started 1am, we got our 1st reading that wasn’t HI, 2am, 3am, 4am, they went just dropping they were plummeting.  The nurses had provided everything required to deal with a hypo if the time came to it.  I just wanted to get to the morning & let Emily have breakfast.  I wanted to seriously avoid treatment to a screaming Emily in a ward full of sick children. For the 1st time she looked really sick from her diabetes.  Even at diagnosis she didn’t look this ill – Bless her

hospital nov 11

I was now on 30 minute BG checks.  By 5:30am she was 4.2, It couldn’t be left any longer.  I woke Emily & hoped for a happy child, and very unlike her she was  co-operative.  She WANTED food.  The nurses fetched toast & jam for her while every other child slept, sitting eating in the dark.

For the next 6 hours we battled with her BG, but not once did she hypo.  Things started to calm, her BG was holding steady rather than dropping.  At lunchtime the next day her pump was re-attached.

I then stubbornly & probably not correctly in some people’s eyes argued with the DSN that I never got on with.  Yes she knew more this time, but I was tired and not to be messed with.  I wanted to take Emily home.  She tried scare tactics saying she could crash at any time & it wasn’t safe, however I spoke to another DSN who said she will be fine & we could go.  In hindsight another 6 hours would have been a better plan of action but as mentioned I was tired & I really did have Emily’s best intentions at heart.  She was frustrated, bored and wanted to be home in familiar surroundings.

Everything else was uneventful & within 24 hours Emily was back to 100%, looking like nothing had happened.

24hrs

But the point remains serious failures from our Diabetes Team, the Pharmacy & ourselves.  This wasn’t the end of the matter.  The PCT (Now known as the CCG) had to be involved, Boots Pharmacy were investigated.  Insulin vials were taken as evidence & every member was interviewed along with us.

It dragged on a while, we were eventually visited by the PCT & made aware of the findings, Boots were hit with a big fine for the error.  New guidelines were announced for every Boots Pharmacy which meant Glulisine & Glargine no longer shared the same fridge.  In fact they’re meant to be nowhere near each other.  We received an apology from Boots & that for us was the end of the matter.

I would like to think we & Emily suffered that awful day so that no-one else would have to.  If the changes stop it happening in future then it was worth all the worry.

The failure remains that at diagnosis not enough information was available from our diabetes team about different types of insulin, in fact we’d never heard of Glulisine or Glargine until that day, just Aprida, which is something I feel still needs to be worked on in clinic.

So in answer to the original question – Clinic, No & Pharmacy, Yes

Question 4 – Most T1 and T2′s are expert patients, do you feel you know more than the Health care professional? Do you ever feel patronised?

Yes, this is why we left our old clinic, everything came from the big book of diabetes.  They were not willing to take the time to care.  It was only through the DOC that I realised just how inept they were.  Undoubtedly we know more than the HCP, we live this on a daily basis.  Each case is different and need to be treated as such.  I think as patients & carers we deserve a lot more respect for what we do.

Question 5 – Have you ever been offered any other lifestyle advice from your pharmacist, Eg – footcare, weight loss, minor ailments?

No, we have always been told Emily is too young to worry about these things.

Thank you for listening to me ramble far too much!

I AM IRON MAN!

Time for some shameless self promotion I feel.

Thank you all for your input into my costume idea for running the Virgin London Marathon.  The decision has been made, not sure it’ll take too much guessing what I’ve gone for from the title.  I do apologise for the confirmation below of the most out of shape Iron Man in history!

ironman

I’ve made recent struggles very clear on this blog regarding my plans to run the Virgin London Marathon for JDRF.  Emily’s overnight control had been very erratic, I had become very unwell & things were not looking great.  In fact on the 9th February I had written off my prep race that is on 2nd March.  However after writing things changed here.  Levels settled, overnight tests were not needed every night & slowly my body recharged own health improved.

I sat down & made my own plan and despite missing targets slightly I did manage my final 15K run on Saturday, so this Sunday I WILL be running my prep race (on just 2 weeks training instead of 12) around Silverstone.  13.1 miles/21KM.  Half way to London, half way to doing our bit towards finding a cure for T1.

If you can spare anything please donate @ www.justgiving.com/TeamHarris14/

And please share/RT this blog.

Thank You

Getting Social

I hold my hands up, I am very bad with social interaction in big groups, I don’t know why, I just always have been a little socially awkward.  This is why in part despite talking to the #DOC members on a regular basis why I’ve only ever been seen once on either an OurD or GBDOC tweetchat.  Even on Twitter I’m slightly socially inept, and this is with people who I know are awesome.  I attend, I’m just sitting in the background silently, reading my Tweetdeck like the creepy man in the corner.

So imagine my horror to be invited to a Diabetes Party by our clinic to meet other parents and children with T1.  Amy is no better.  So this was going to be an experience.  We all met at iKidz in Banbury & went in rather gingerly, Emily saw the climbing frames & was gone like a shot.

That left two rather awkward looking adults staring at a whole group of parent while we played guess who’s children have D.  We spotted a few straight away, you know what to look for – in men the beard is a giveaway, followed by the lack of sleep slouch.  The women look either Psychotic, eyes bulging from the excess caffeine or long drawn tired faces with hair that despite best attempts is at best a bit wild.  We’re easy to spot.

We chatted to our DSN and they pointed out and introduced us to a couple who looked as nervous as us & we proceeded to shuffle to a table to sit and observe.  I was comfortable again, I don’t mind observing.

Emily was introduced to another T1 girl called Ebony & spent the next hour playing with her.  For us it was important that Emily had this interaction, for the past week she has been going through the heart-wrenching ‘I don’t want Diabetes anymore’ stage again.  It’s been hard, you wish (as I’ve said before) that you could just take this away from them.  To tell then it’s going to be ok one day, but we just can’t.  She doesn’t want to be different, she wants to be like everyone else & yesterday for the 1st time she really was.  They were the gang.  The few other children in the play centre were the odd ones out.

Emily however was still slightly the odd one out.  They all went up for food.  Parents clambered round for finger pricks, a wide variety of meters appeared, fingers wiped & checks done, the food was served then out from every other parent came something very alien to us.  An insulin pen.  Emily was the only child on a pump.  I was as intrigued at the pens as the other adults were with the pump.

This is where we noticed our faux pas on Emily’s outfit.  She wanted to share her pump with everyone, in a flash her dress was above her head exposing her cannula, pump and bright pink knickers.  She didn’t care, she was centre of attention.

As mentioned by others recently there can seem to be a #TeamPump vs #TeamPen divide.  A very good piece was written here by @The5thDiabetic (hope you don’t mind).

http://the5thdiabetic.wordpress.com/2014/02/17/hang-on-who-said-your-way-is-better/

I am a believer in #TeamWhateverWorksForYou.  I would not push anyone towards pumping.  I would just offer advice as to what the pump has to offer.  Having never been on MDI I cannot compare the differences.  This in a way is good.  I can only offer our experience to having a pump.  It is then down to each case to decide what would be best for them.

Interestingly when speaking to another parent yesterday they actually turned down a pump for no other reason than no-one explained the functions of a pump to them.  We were then asked to talk to someone who is very interested to move over to a pump.  She had a 2 ½ year old daughter who hated being injected.  It was all very brief due to the pump batteries dying and her being short of time.  I worked as matchmaker, her & Amy exchanged numbers, they are local.  We will meet up to demo in the next couple of weeks.  I didn’t want to rush everything, choosing a path of treatment is one of the most important things you can do.

I contacted our DSN this morning thanking them for yesterday & also said to pass on our details to any other parents who want to discuss pump life.  All seemed to have little to no knowledge of them, not because they didn’t want to know, but they didn’t know where to look.

I am going to pass links to #DOC member blogs to hopefully put in the next clinic newsletter, in the hope that they can find answers for questions they want & who knows even find the mad bunch on the #DOC and add to the ever increasing numbers.

If you wish to suggest any blog in particular please leave a comment below.

Good Vibes – A Chance Encounter

So today was our day to go talk about how the CGM went.

Bless them trying to decipher what went on while running TBR the entire time, it really wasn’t possible.  It was a mess.  In fact the only thing we are changing is from work done in the past 5 days since the Navigator came off.

But we did explain what a positive effect having a CGM had on everyone involved in Emily’s care & Emily of course.  She had the sparkle back in her eyes, less mood swings.  She was a close to a normal 5 yr old as we are going to get.

But the best part of sitting discussing the data was again talking about changing pumps this summer to encompass a CGM into it.

‘So which pump were you looking at?’ our DSN asked.

‘We want to look closely at the Animas Vibe, I think that’s top of our list’  I told them.

‘Well we have Paul outside the door, he’s our Animas rep, would you like to have a chat, I think he is leaving soon’

Now in my head i was saying ‘Of course I do you silly woman, don’t ask stupid questions, someone go hog tie him and drag him in’.  I opted for the far more polite ‘Oh yes please, that would be great’.  See I can be tactful.

Paul pokes his head around the door frame ‘Hello’ He said

** Don’t make me drag your arse in here, i thought **

‘I’ll just go get you some information from the car’

** He better not be trying to run **

Paul comes back a couple of minutes later with a Dexcom box, sits down and opens it up to show us an Animas Vibe. and a Dexcom sensor.  It was tiny in comparison to the Navigator.  This is a big bonus.  The pump was as I expected really.  I didn’t however realise it had an inbuilt bolus advisor.  Something we had been concerned about.  And claims it was fully waterproof.  I am interested just how many people put that to the test on a regular basis.

Then there’s Diasend.  Something I’ve wanted access to for some time, and to my surprise, something despite never mentioning it, our clinic is using for many of their patients.  They also seem very forward in pushing for CGM’s.  So I haven’t mentioned about self-funding just yet.  We will continue to see what the CCG can offer us before playing our hand.

I’ve noticed now that I’ve been staring at the pump a little too long.  Getting lost in the idea of mapping my escape route with it.  I thought better of it.  No doubt i’d only end up hitting an automatic door or getting as far as halfway before realising I just can’t run that far.  He looked pretty quick.  I’d never make it.

So I guess we’ll have to wait for now.  But the future looks brighter.  Changes are coming.  Today was progress & a foot in the door.  For now back to a few basal changes and overnight testing.  It doesn’t feel so bad when there’s a light at the end of the tunnel to aim at.

animas-vibe

Quarantine

So it looks like i’m in Quarantine.

I’ve been thrown out of work & not to return in a hurry. Why nobody wants to share my germs I have no idea. But it is freeing up a lot of time. I’ve decided that maybe I should embrace a couple of days of peace to catch up on a little more sleep, recover & take a proper look into Emily’s future care plan.

The CGM last week was a huge eye opener. We did not get the chance to iron out the problems we had on basal due to running a temporary basal rate from illness but it did give an over riding feeling of security.

Without doubt last week would have been hell without it. I think that is why I got so freaked out on Sunday when it expired. Fortunately as long as Emily keeps away from me she seems to be on the mend and we’ve lost the high BG readings, but the hypo’s continue,

Thursday we have a meeting at clinic to download the CGM data and discuss how it went and where we go next. I’m guessing if we can get them on side with the CGM idea then that may help our chances, We need to discuss our pump options as well. Something I also need to do with some members of the DOC.

I’m also going to be taking some time to go through a wide number of DOC blogs online that I’ve not had the focus to look at lately.

So i’m guessing that gives me 3 days at home. I’m pretty sure in that time I could even sort out the UK flood issues. I can’t just lie about and do nothing. It will drive me mad. However I will never be too bored to start the housework.

Hating Diabetes with a Vengeance

Today has not been a good day.  Actually it hasn’t been a good weekend as a whole.

The fact I currently have 3 other half written blog posts behind the scenes shows my ability to follow things through at present.  I am keeping out of Amy & Emily’s way because I seem to spend my time snapping at them for no other reason than I am getting annoyed with things that are beyond their control.  And once I have shouted at them for the poorest reason I just end up feeling worse & guilty for doing so.

So here are just a few things that have got me to this coiled up ball of stress.

1.  Emily has spent the entire weekend with either a very high BG or hypo, she only hits range while passing through to each extreme.  Despite having the Navigator to monitor I have had very limited success stopping each extreme.

2.  This morning the sensor of the Navigator died.  I instantly felt lost.  Yes we had coped well over 3 years without a CGM but it had given so much more confidence to us all this week.  It has felt like we had got a small part of our lives back & now it is gone.  I’ll go back to sleeping 2-4 hours a night.  I know even if we were to apply for funding this would be both unlikely and time consuming.  At best we are looking at another 6 months before we can self fund.

3.  I’m sick, my immune system has been battered in the past 2 months due to Emily being all over the place, the lack of sleep has meant I have caught every bug going & not been able to shift them.  I’ve had 2 head colds & bronchitis, on top of that I’ve had issues with my chest, moments of sheer panic when I cannot breathe, a racing heart & blood pressure high enough to warrant closer monitoring by my GP.  Finally I have a feeling that initially one, now both eyes have the feeling of someone pushing needles in them from behind while being squeezed in a nutcracker.  Something again the GP wants checked as they were concerned of Glaucoma. I can’t think of the last day when I didn’t feel broken with a crushing headache.

4.  Since D has taken over the thing to go to the wall is my running.  I simply cannot train on no sleep.  The nights in our house are my responsibility.  If my wife has to do them she just isn’t worth living with for the next 4 days (she won’t appreciate me saying this but she also won’t deny it).  So I do the long nights.  I am meant to be running the London Marathon in 2 months for JDRF.  The irony the condition I am trying to raise money for is the thing stopping me from running is not lost on me.  But it is getting me down.  Today I came to the decision that I would not be attempting to make my prep race of Silverstone in 3 weeks.  With all the combined health issues it would not be safe & certainly would not aide my slim chance of being fit for London in 2 months.  Not only have I wanted to complete VLM for many years but also I do not want to let down JDRF & those I am trying to raise money for.

It is doubly hard as I keep seeing Amy going out, enjoying her running and doing so well.  I am proud of her as I always have been but the thought that we will not be able to do all this together is getting me down.  She also does not take well to accepting she is improving so when she comes in acting like Eeyore saying how awful it was despite running excellent times i’m feeling less than tolerant to it.  But I am so proud, if she came in happy and feeling good I would share that but I can’t stand someone miserable after coming in from something I want to be getting out there and doing.

I feel like at the moment I’m looking at a 5000 piece jigsaw puzzle and don’t have a clue where to start.  I feel stuck in a vicious downward spiral that I can’t climb up from.  Emily is always going to be the number one priority, her well-being & safety will always come first.  But I know what means for everything else.  I just have to find a way to come to terms with it.

Those I would usually talk to at times like this, blow of steam to & look for the positives seemed to have disappeared into thin air, and i’m pretty sure they wouldn’t waste their times listening to me rant here so will go on oblivious to the struggles going on at present.  So unfortunately I’ve wasted all your time reading this instead.  Sorry!

So this weekend I am hating Diabetes with a vengeance, it has taken over.  It hasn’t just changed Emily’s future but all of ours, crushing ambitions on a daily basis, causing illness and complications beyond the pancreas it has attacked.  I know things will eventually improve.  We’ll get the control back and maybe have some normality in the house.  But for now there seems no end in sight.  And that’s the hardest thing to deal with.

Flight of the Navigator

The eagle has landed.

On Tuesday we finally got our hands on a CGM to play about with.  We only have it for 5 days but it will get us a feel for them & to see if it is a route we want to go down in the future.  I’d read many blog posts about the Navigator so knew what to expect.  Sadly as a 5 year old Emily hadn’t.  And as with anything new D-Related it scared the life out of her.

Emily still shows her displeasure at cannula changes, this can be in the form of shouting while we put it in to all out war, kicks to the face & thumping.  It just depends on her current bg and general mood.

So I knew we may have a battle to get this CGM Sensor in.  May need a but of brute force to just pin her down and get it in her side or so I thought.  No chance, upon getting to our appointment we were informed it would be best in her arm.  For the next 30 minutes Emily screamed, got hysterical, begged, hide and swung her arm so no-one could get near it.

The only thing I can liken this to is when Emily has been DKA & needing to have a saline drip in her hand.  That’s how worked up she got.  And we hadn’t had to do that for a couple of years now.

Eventually we had to strike, as Emily hugged Mummy I pinned her arm in place and our DSN stuck down the sensor & inserted it.  We were not popular anymore!

I needed to bundle her into the car & get her to Toys R Us quickly, this felt like it was about to get expensive.  In the end it wasn’t so bad, a scooter & some bracelets for £30.  I felt slightly relieved.  This is her outside Toys R us insisting on a sling from a scarf because I quote ‘It’s worse than a broken arm’.

sling

Anyway back to the Navigator, walking around Toys R Us it was blank, awaiting the beep for our 1st calibration.  Off it went, nice & easy to test and then hey presto, we had a blood reading on the screen.  We were up & running.  The OCD had started.  Don’t go out of range, stop running off.  Not easy in a toy shop!

follow

We get home and put another pump belt on & leave Emily to look after it.  Despite the whimpering the sling is now off and she is happy to play at home, albeit with a bandage to keep it covered up.  Instantly I can see a problem.  That lovely little arrow seems to love pointing up.  All the time.  Even for Emily it’s high.  I can see I was already loving and hating the new influx of information.

She had insulin active, not much but a bit.  So I though let’s play, I worked out a correction dose and put it through.  For the next 2 hours it was still going up!  What is going on?  Everything had be counted correctly, why it is not working?  The tiredness was creeping in, it was only 6pm.  The blasted alarm was ringing every 5 minutes to notify high BG.  I was tempted to throw that handset out the window.  It took 2 more corrections to get her back into range.  Her usage today was well up on usual.  Her cold had to be coming back.  We’ll work on that tomorrow I thought, he BG was in range.  It was low 7’s.  I was happy.  Finally we could get some sleep.

WRONG!!  Within 2 hours the alarm was going off…  How was this even possible?  This is what I woke up to

nightrage

It was mocking me, teasing me with sleep.  It was just before 2am.  It was going to be a very long night.  In fact I didn’t get back to bed.  I ploughed correction after correction in and by 8am the best BG we had was 9.8.  TBR was on, but now ramped up to 120%.

Lunch reading again was high.  Time to increase all food bolus too.  That was it.  Magic, it just clicked.  The chaos was calmed.  Her bloods were looping up and down for food and back into range.  Something like this would have usually taken days to unravel.  Trial and error to get her bloods correct.  With the Navigator it was all there, easier to see the trend and fix immediately.  I’ve saved myself days of sleepless nights.  You didn’t say it had to go back did you?

I went to bed at 10:15, that doesn’t happen in my house, it was weird.  No TV, just time to catch up on sleep, I even celebrated with a tweet proudly saying I’m going to bed.  But this is the part none of you saw…  15 minutes later…

low

ARE YOU KIDDING ME!!  I was fried, I was ranty, everyone was asleep.  There was no-one to hear the expletives coming out my mouth.  It was red mist, I was worked up but why.  It was only a warning.  She wasn’t yet hypo.  I reduced the TBR to 110% and waited for an hour.  Sitting next to Emily in her room staring at the Navigator constantly.  OCD at its best.  But it held level.  By half 11, an hour after everyone thought I was asleep I could finally go back to bed.

Normally I’d have not had a warning.  I’d have tested at midnight, found her low, woke her up, forced haribo or hypostop in, gone made a drink, retested at 2am & then hopefully got to bed.  I earned myself an extra 2.5 hours in bed.  I need this in my life 24/7

A CGM is the most amazing and frustrating bit of tech I have come across to date.  It undoubtedly would improve Emily’s control.  As discussed before it would especially help parents who are taking care of a T1 as we can’t feel the ups & downs.

It would mean more sleep for us.  More stability for Emily & more confidence for her school when she is there.  For now this is all a bit of a pipedream.  We will apply to the CCG for funding, explain our situation like everyone else does.  But I don’t hold out much hope despite how erratic Emily’s levels seem to get.

But there is a glimmer of hope.  In August we are due a pump upgrade, we are discussing a change to an Animas Vibe to encompass self funding the Dexcom CGM if it is not NHS funded.  It would not be easy but with some family support we may be able to manage it.  After just 48 hours I can honestly say you cannot put a price on having this at your disposal.

If you get the opportunity to trial a CGM bite their hand off!  It will give you an entirely new outlook on your diabetes management.

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