Tag Archives: diabetic nurse specialist

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

Six Months ….

 

It’s now been six months since that awful day back in September 2015.

A lot has changed since then. It’s been a week of reflection, tears, anger and smiles as we look back on how things have changed for us in six months. We’ve learnt a lot since type 1 diabetes joined our family about ourselves, diabetes and life some good, some bad….

 

  1. It doesn’t get easier as time goes on:

Type 1 diabetes in children changes daily. You can never predict when it’s going to happen or what is going to happen. After a night of testing you wake up and analyse your data go over the carbs, food for the previous day, wonder if you did something wrong or if illness played a part. The truth is that’s just diabetes and it will never settle.

 

  1. Pumps are not the cure of diabetes:

You develop a love hate relationship with the insulin pump. Its function is to keep Arlo alive and drip insulin into his body twenty four hours a day. It stops the need for injections up to four to six times a day, and it stops Arlo legs getting infected injected sites. It doesn’t stop type one being there and it doesn’t let you forget. Watching your child play and catching a glimpse of the tubing or pump, catching the eye of a parent or child wondering what is wrong that child is heart-breaking.

 

  1. Arlo is a pretty amazing person:

I make no apologies for gushing about how truly amazing Arlo is on a daily basis. We like every other parent used to fret about his behaviour, his hatred of doing homework, was he behind at school?  None of that matters now. Arlo has had to battle and deal with “grown up shit!” On a daily basis with his diabetes. He takes cannula changes and finger prick testing in his stride, he hates doing it but knows he has to. He knows now that if his levels are too low or too high come bedtime that we will be doing night testing. Arlo says that hypos feel like “I’ve got no bones in my body” and hypers feel like “I’ve got loads of gasses trying to escape from by body and all I can is run around and be manic to get them out!!”   He hates being called brave. When he is having a really bad day he sobs “it’s so hard being brave all the time mummy!” He inspires us every day.

  1. You have to let go:

Every day I want to keep Arlo at home to protect him. Every day we want to stay in our Peace bubble. But instead every day we put on our smiles and let Arlo know that everything is ok.  Arlo is bought up to be social, and to know that there is a whole world out there that is filled with family, friends and adventures. We say to him every day you can do whatever you want yet sometimes in the past six months we’ve not neseccarry been true to our word. Type 1 wasn’t part of the plan, neither was bringing up our boy in an environment where we constantly kept saying you can’t do that or having one of us constantly there to watch him when he was at afterschool clubs or parties. So little by little we’ve learnt to let go and trust Arlo & the people he is with.

  1. What matters is your health, family & friends :

Nothing else matters in the grand scheme of things. Since type 1 diabetes we have both left our jobs in London for jobs 10 mins away from where we live. We are close by to the school, and to Arlo when he is on play dates and we now spend most evenings eating dinner at the kitchen table the three of us at a reasonable time. We may not be earning big bucks but we are here for Arlo. We are despite everything very happy and ironically have found a much healthier, happier work life balance since type 1 diabetes came into our lives.

  1. There is Never a high five moment :

if you are lucky you may get a whole three days where levels have been good, carbs have been kind and you’ve not had to night but just as your about to high five and give yourself a pat on the back, sigh a big breath of relief something will happen and levels will go sky high or too low that dinner from two days ago that gave you perfect levels before and after is now making the levels go sky high.  Half an hour of PE doesn’t affect the levels that much last week but this week you’re having hypos for 8 hours no matter how much insulin you’ve given. A cut to knee, a cold with a slight temp … yep you’ve guessed it back to square one. Growth hormones that list is endless. When you’ve racked your brains as to why this has happened, you’ve gone through the list in your heard, panicked called Mrs L the diabetic nurse and Penny you have to come to the conclusion that this is diabetes and without no rhyme or reason it can change just like that.

  1. You become experts at making it look easy:

Every single waking moment we are always five steps ahead of type 1 diabetes. I’ve predicted and planned for the occasions where there may be food, the treats come out on playdates. The stares from other as we do levels and pump. The comments that you learn not to get angry about because people are not unkind they are inquisitive.  It is now an activity of normal daily living for us and even though we make it look easy it’s not.

blog pic 2

New Normal= New Friends.

I am 41 years old , have been in my job for past 10 years. I have lived in Dorking for the past 8 years. I have a very close group of friends, a husband, sister and cousin  all of  whom I am  lucky enough to  consider my best mates. I guess you could say I am pretty settled, happy and content with what I have.  When Arlo was diagnosed it felt like my whole world had just ended and a new one popped up to replace the old one. Everything looked the same but it was different, My settled, happy content life had been taken away from us. Or at least that’s how I felt in those first couple of weeks following diagnosis. I felt very isolated, very alone. The day after Arlo was diagnosed two friends texted me saying they knew someone whose child also had type 1 diabetes and did I want their contact details.

I remember reading the texts and even though at the time I was still trying to get my head around everything. Just knowing there was other parents out there made me less lonely.

One of the mums – Penny lived in the next village to us. Like us Penny had a six year old girl with type 1 diabetes, unlike us she also had a twelve year old boy with type 1 diabetes!

Numbers and emails were exchanged and then three weeks later we arranged to meet.

I was slightly nervous to begin with. I had no idea what the outcome of our meeting would be. Weather it would make me feel better or worse about our situation.

We clocked each other and before even speaking Penny just grabbed me and said ” I just need to give you a hug and tell you it will get better.”

I spent most of the time switching between sobbing , ranting and staring in total bewilderment as Penny passed over to me a Smiggle case ( see end of post for information),  snippets of information, and a whole heap of paperwork  to help us when Arlo went back to school all of which Penny had compiled herself to help and support the school.  Arlo had just gone back to school for mornings only with 1/2 hourly telephone calls from us to check everything was ok.  I had not even contemplated how we were going to mange the school and work when Arlo needed to go back full time. Penny motivated me into looking at the future and to start thinking about a back to school plan.

That was six months ago and Penny and I still meet as often as we can. I didn’t know it back then but Penny much  like Mrs  L- Arlo’s Diabetic Nurse  are two people who have come into my life and have become friends as well as a huge support .  Being thrown a curve ball that changes your life path makes you think.  Had it not been for Type 1 Diabetes our lives would never have crossed. Had we met in different circumstances say at school / school clubs / though our kids I’m pretty sure that we would have connected and become friends.

Perks of diabetes #1 = New Friends smiley face

Smiggle Pencil Cases. 

Penny introduced me to the world of Smiggle. They are pencil cases that make excellent cases for kids and diabetes equipment. They are perfect size for kids to carry or to keep in there school bag, they are also perfect size to chuck in your bag when you are heading out.

You can easily  fit into your bag :

  • Blood Glucose machine
  • Finger pricker
  • Test Strips
  • Diabetic levels diary
  • NOK and Hospital information /medical alert information
  • Insulin pens x2 in our case it was novorapid & Lantus
  • Glucose sweets and glucogel
  • Carton apple juice

These are the soft cases which are £12.00

http://www.smiggle.co.uk/shop/en/smiggleuk/pencil-cases

 

Homecoming.

It felt strange heading home from hospital. We had ticked all the boxes that were required of us, we had become hypo aware in 24 hours, Arlo’s levels had come down, &  he no longer had ketones in his blood . He was no longer in the danger zone for type 1 diabetes. Home was the next stop. I didn’t want to leave the safe confines of the hospital. I was petrified to bring Arlo home, here we had nurses & Drs with us 24 hours a day I could live with crappy food and uncomfortable fold away bed just as long as Arlo was safe, how could we do that at home ?

I kept crying at the thought of being at home without any medical staff to help us. What stopped me from crying was Arlo who sat on the bed looked at Xrss and said “mummy is crying again daddy – she is always crying now!” I looked at Arlo saw this amazing boy who had just had his life turned upside down here he was  was dealing with it in the most amazing way and then there was me a crying wreck. He was still our boy. He had type 1 diabetes but he was still our boy and he needed us to be strong for him.

 

Despite my fears home felt good.  We had contact with the Diabetic Nurses every 2 hours on the phone and guided by them we got through the weekend. I wince when I look back at his levels for that time we hardly  managed to get it down below 20 in that first week. Having a hypo terrified us but that first week looking at his levels we were know where near reaching “4 is the floor!”

We were confused as to this, I being the nurse slightly panicked at the thought of the consistently high sugar levels. I had very little knowledge of Diabetes but what I did know was consistent high levels of sugar in the blood would start to damage nerve endings , could result in kidney failure, blindness and peripheral neuropathy. Armed with my knowledge I was a nervous wreck panicking that Arlo was going to have to deal with all the above. they say a little knowhow can be damaging this couldn’t have been more true for me for the little knowledge I had was indeed correct but for long term uncontrollable diabetes with consistently high sugar levels. What Arlo was experiencing was completely normal in the first couple of weeks of diagnosis. Arlo’s priority was getting his health and his body back to normal and that meant replacing the weight he had lost (about 1.5 stone) and his fat stores and nutrients. His body was screaming out for food and that’s what we had to do feed him resulting in a period of high levels. 

It wasn’t easy with high levels comes a rather manic, energetic sometimes uncontrollable Arlo. We’ve now learnt 3 months down the line that anything above 12 mmols and Arlo starts to loose concentration, can become quite obnoxious, cheeky, energetic and exhausting to be around! You can imagine what he was like with levels of 17-28mmols. Added to this Arlo was terrified to go to bed he wouldn’t go to sleep, wouldn’t leave our sides. For the first 2 weeks we would all just collapse in bed and fall asleep together. We couldn’t blame him, neither Xrss nor myself wanted to go to sleep we were all terrified at bedtime & relived when daylight hit and we had made it through another night.

Awful thoughts go through your mind at night. To let go to sleep is hard this meant you were not in control, it meant you couldn’t be one step ahead of diabetes it meant anything could happen. What if he had a hypo and we didn’t know, what if he was high every night how would this affect him in the future? We knew we couldn’t sustain this thought process forever it was unrealistic. We had to put our trust in the levels and the specialists that he would be ok.

Those first couple of weeks we didn’t really leave the house. Arlo was still at home he wasn’t stable enough to go to school just yet. To be honest we hadn’t thought beyond the next couple of weeks and how we would manage school and work. Whilst we were at home and unbeknown to us our DNS was working hard in the background in preparing the school for Arlo’s return. Before Arlo could return to school the staff would need to be trained in how to administer an insulin injection, check blood glucose levels with the finger prick test and know how to manage hypos and hypers if they were to occur. Arlo’s school is a lovely small village infant school with only 3 years and 3 class’s approx 75 children in total. The DNS had arranged some training sessions with all the staff with Mrs P taken on the role as Arlo’s go to person at school. I was petrified in the thought of Arlo going back to school thoughts went through my mind how would they cope, how would they know if he was having a hypo? Would they know what to do? It was such a tiny school I wondered if they had ever had to deal with medical conditions that could potentially be life threatening.  We were fortunate enough that both our employees allowed us time at home to concentrate on Arlo, that’s exactly what we did for two and half weeks. During this time and before Arlo went back to school we went along to one of the training sessions that the DNS had arranged with all the staff. I sat in front of all the staff and just sobbed it was all so overwhelming and terrifying for me. I wasn’t ready to let go and allow someone else to be responsible for Arlo’s diabetes whilst he was at school. I wasn’t ready to go back to my job which was a 2 hour commute away in London.  Deep down I knew Arlo had to go back to school, I knew we had to get on with our normal everyday life of work, school, socialising, after school clubs etc . So it began the mental preparation of getting back to our normal everyday activities just with type 1 diabetes thrown in the mix to shake it up a bit.

 

My sister had found us an amazing book for Arlo to read called Even Superhero’s get Diabetes by Sue Ganz-Schmitt . It was an excellent book, one that all of us referred to in the first couple of weeks of diagnosis. It helped Arlo understand what was happening now & also leading up to his diagnosis.

 

For us we used it much like a medical book referring to pages when we were not quite sure for example the honey moon phase (which I will come back to in a separate post) we kept thinking this was happening – it wasn’t and we did use this book to clarify what exactly the honeymoon phase was.

 

For those reading this who  like us are new to type 1 diabetes I would thoroughly recommend this book, it really helped us in first couple of weeks.

 

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.