Tag Archives: blood sugar

Hyper Ballad

Its been a week of hypers, hypos, new pumps and sick bugs in the Peace household. Its been a tough week for all of us. The sick bug hit us Thursday evening and terrified us all when Arlo’s levels dropped low and were dropping instead of going up. We didn’t know what to do, we had read the sick day rules had the plan but when it came to it we all just stared at each waiting for someone to shake us and tell us what to do. That happened in the shape of  our Diabetic Nurse. Over the phone she told us what we needed to do, what to do if it all went tits up and ended  with saying “I’m keeping my phone on all night call me or the hospital at any time, you can do this!”

We did we survived the first night, without a hospital admission. Arlo spoke first, “Mummy we didn’t go to hospital!” then Chris spoke ” Well we did it, at least we know what to expect now, that’s that first out of the way.”

We did do it we were not quite out of the woods and didn’t come out of it unscathed. Arlo’s poor finger tips were covered in small blood blisters,  he now screamed ouch when we did a finger prick test due to having so many tests carried out during the night with the sick bug. Our heads hurt trying to work out where we were at with the pump, the insulin and the sick day rules.

bjork 3

Hopefully next time we would be more on it and less terrified. A text from Penny who had years of experience being a parent of a type 1  made me think that all is ok and that it does get easier.

When things get a bit tough I  find myself listening to a lot of Bjork and Tori Amos. This week a little sleep deprived, fed up and angry at diabetes for what  Arlo had to go through the last week. I found myself listening to one of my favourite songs  Bjork Hyper Ballard the Brodsky Quartet Version. I found myself sobbing whilst listening to the lyrics. They seemed to be quite fitting to how I was feeling now and for the past 6 months.

We had survived the first blip but sadness and anger filled me knowing that this wouldn’t be the last time Arlo had to endure an illness and that there were going to many other firsts to get over.

bjork pic

Hyper Ballad
Bjork 1995

we live on a mountain
right at the top
there’s a beautiful view
from the top of the mountain
every morning i walk towards the edge
and throw little things off
like:
car-parts, bottles and cutlery
or whatever i find lying around

it’s become a habit
a way
to start the day

i go through this
before you wake up
so i can feel happier
to be safe up here with you

it’s real early morning
no-one is awake
i’m back at my cliff
still throwing things off
i listen to the sounds they make
on their way down
i follow with my eyes ’til they crash
imagine what my body would sound like
slamming against those rocks

and when it lands
will my eyes
be closed or open?

i’ll go through all this
before you wake up
so i can feel happier  to be safe up here with you

Your son has Type 1 Diabetes!

I could hear the familiar sounds of a ward waking up for the day. Arlo was asleep, I had not slept at all I spent the night holding Arlo’s hand staring at my beautiful boy whom today was Arlo Peace type 1 diabetic.  I was full of mixed emotions. I could see that the nurses had placed some leaflets on the table about diabetes next to the ketones and glucose monitor. I didn’t want to look at them. I didn’t want to do anything other than hold my baby’s hand.

The guilt hit me first, it hit hard. I was a nurse why didn’t I spot the signs. I had very nearly put my son into a coma by not spotting the signs. I had spent 2 days before the hospital admission telling him off for constantly wetting himself and taking drinks from the fridge. Two days later were in hospital.

Sensible me tried to brush off the guilt and concentrate on Arlo.

Arlo woke to say he was hungry as the nurse came to do his blood sugar level. The nurse mentioned he may be hungry for a while. She was not wrong! Five Weetabix later Arlo was asking for more food.

 

We were told that this was completely normal, he would be starving for the next couple of weeks whilst his body started replacing all the lost nutrients and weight he had lost.

The first thing that struck me was he had not gone for a wee all night and had not asked for a drink. The second thing that hit me was that we needed to give him another insulin injection.

The consultant who we had not met yet came over with the nurse to give the insulin. Arlo looked at us with a look of sadness mixed with fear. He didn’t want to have the insulin, I couldn’t blame him really but we had to persuade our sobbing boy that he had to have the injection. In the end he finally admitted defeat and let us do the injection.

The consultant then sat with us and talked. All I can recall from this conversation was the consultant saying,    ” your son has type 1 diabetes, there was nothing you or Arlo did or anything you could have done to prevent this.” The silence was painful nobody said anything. I’m normally the first to fill a silent room with mindless chat but I had no words. I’m sure looking back it wasn’t longer than 1 minute back then it  felt like forever. The consultant broke the silence and said to us, “Arlo can do anything he wants to do, there are only two things that Arlo won’t be able to do and that’s be a pilot and join the army.” Xrss squeezed my hand and smiled at me. I had always said that one of my fears was Arlo deciding he wanted to go and join the army. The irrational mummy in me didn’t want my boy to join the army and now the choice was taken away from him he would never be able to join the army.

The consultant left and the Diabetic Nurse Specialist (DNS) turned up. Introduced herself, left a bag of goodies for Arlo and apologised as she had to head off for teaching promising she would be back later to speak to us. I didn’t know at the time but the DNS was going to be a consistent solid rock to help us once we were at home and school.

It was only 9am and it felt like we had done a full day already. I still couldn’t face looking at the leaflet’s and books. Arlo was feeling better and had eaten two bowls of Weetabix (four Weetabix in each bowl!!)

We left the ward and went to costa. The nurses said “give him whatever he fancies he will be starving”

He wanted apple juice and flap jack so we gave him apple juice and flapjack. When we got to the ward they did his finger prick test (something that he has never had any problems with from the outset). His level had gone back to above 28mmol (normal levels are between 4-7mmol). It was because of the apple juice and flapjack they said. “Maybe don’t have apple juice anymore” the nurses said.

Yet again the guilt hit us hard.

The next 2 days in hospital felt like eternity. As Arlo started to feel better it was a bit of an adventure to him. He wasn’t really aware how serious and how close to life threatening his symptom’s had become. He also wasn’t aware of how big an impact having type 1 diabetes would be. He was only reminded when it came to having insulin injections and levels tested.

I remember chatting to the DNS the following day, still shell shocked I said ” I can’t believe that 2 days ago Arlo didn’t have type 1 diabetes and today he has, I dint know we are going to manage, we work, we go to Glastonbury festival every year, we go camping how are we going to manage”  The Dns put her hand on  my leg looked at me and said ” no, you did have a child with type 1 diabetes you just didn’t know it until now, you managed that ok and you will manage this ok and still do everything  you always did” I laughed, ignorance was definitely bliss.  We had had the most amazing holiday despite Arlo having undiagnosed diabetes. Would it have been the same had we known before going? I’m not sure.

We were allowed back him once we were “hypo aware” and Arlo’s glucose and ketones levels were within normal range.

“Hypo aware” meant us knowing what to do if Arlo blood glucose level went down to dangerously low level of below 4mmol. “Four is the floor!!” is what we had to remember. if this happened we had to act fast. Listening to the DNS talk to us about managing hypos terrified us both, we had to listen and we had to get on with it there really wasn’t any room for us to fear the hypos. If Arlo could be brave enough to have the injections then we could be strong enough to manage his hypos if they occurred.

So we got on with it, stayed strong and both secretly prayed we didn’t have to deal with any hypos.

Armed with a sharps bin, a great big bag of insulin and equipment, a ton of leaflet’s and emergency telephone numbers we were discharged from the hospital 3 days later. We were bringing our baby home to start our new normal.

 

What are ketones?

Ketones are an acid remaining when the body burns its own fat.

When the body has insufficient insulin, it cannot get glucose from the blood into the body’s cells to use as energy and will instead begin to burn fat.The liver converts fatty acids into ketones which are then released into the bloodstream for use as energy. It is normal to have a low level of ketones as ketones will be produced whenever body fat is burned.

In people that are insulin dependent, such as people with type 1 diabetes, however, high levels of ketones in the blood can result from taking too little insulin and this can lead to a particularly dangerous condition known as ketoacidosis.

What are blood glucose levels?

Blood sugar levels are literally the amount of glucose in the blood, sometimes called the serum glucose level. Usually, this amount is expressed as millimoles per litre (mmol/l) and stay stable amongst people without diabetes at around 4-8mmol/L.

(ref source: www.diabetes.co.uk)

 

The Beginning…

 

post 1

It’s difficult to know where to start the first post .

I guess at point of diagnosis would be a good place to start.  The thing is the problems (not that we thought they were problems at the time) came into our live’s way before September.

We now know that Arlo’s symptoms started whilst we were on holiday for most of August. We weren’t to know that there were any signs until much later. 

We were away for 3 weeks travelling through France, Switzerland & Spain to drive to Ibiza. Arlo was never a big water drinker.  In fact he wasn’t a massive drinker full stop so I remember saying to Arlo “now make sure you drink plenty of water to hydrate as it’s going to be really hot and we will be in the camper for long periods of times so you need to drink lots.” 

So he drank, he drank and he drank sometimes 2 litres a day. 

We were in hot countries stuck in the camper for long periods.  I was pleased he had listened to me and was drinking loads. 

He kept wetting himself/wanting to go the toilet all the time, “Well of course he was the amount he was drinking”  I said to myself. 

He was sleeping during the day but he had been in the sea all day snorkelling,  playing with his friends, going to bed late; of course he was going to be shattered. 

He didn’t eat much during the holiday but then none of us did “you don’t feel that hungry in the sun” is what we kept saying to each other. 

He was looking slender and lean  but we just assumed he was growing and turning into his  daddy who was 6ft tall and slender.  Writing this now I am filled with guilt and kick myself that I didn’t notice the signs when we were on holiday on even when we got back when the symptoms continued.

We got back around the August bank holiday Arlo continued to drink anything he could get hold of and wet himself during the day at night time, it was getting exhausting. 

We were two days from heading back to school after our amazing summer holidays. I was keen to get it sorted so booked a doctors appointment, it crossed my mind that he may have a urine infection.

We never made it to the doctors. The next day, Wednesday 2nd Sept 2015, Arlo started to fall asleep during the day, had no energy and was eating everything in his sight.  He was at a friends whilst I was at work.  My friend mentioned he wasn’t himself that day.  That evening when I got home I tested his wee with some urine strips I had bought earlier that day.  His sugar levels were off the scale, wondering if I should wait until morning to see the Gp or head to hospital, my mummy gut instinct kicked in and I scooped him up and took him down to our local A&E. 

 

post 2

My husband was working nights and I didn’t think it was anything to worry about I so told him to stay put. We got to the hospital, checked in and waited less than 5 Min’s before we were seen.  This point becomes a bit of a blur.  I remember Arlo being tested, being told his blood glucose level was 36mmol, his ketones were dangerously high.  I remember a nurse saying that he probably would not have made it to tomorrow and a coma would have been likely had I not bought him in.  I remember lots of doctors and someone mentioning type 1 diabetes.  In a daze I rang my husband and told him to get to the hopsital as soon as possible.  He had already left, I guess his daddy gut instinct had kicked in as well. 

A couple of blood tests later and a rather traumatic cannula insertion we were admitted up to the ward  at approx 1am.  He needed an insulin injection, later I would find out that he would need insulin injections 4 times a day for the rest of his life, I would be told that my son aged 5 3/4 had developed type 1 diabetes.

This was the night our life’s changed forever.