Amy’s school trip to Germany, 27 days after getting insulin pump


27 days after getting her insulin pump Amy went on her first European school trip, a two night stay in Koln, Germany.

Too soon after getting the pump?

When our DSN (Diabetes Specialist Nurse) called to let us know Amy would get her pump on the 20th June I was elated, before seconds later I remembered about her school residential trip to Germany, which was only a few weeks after. The DSN didn’t seem too worried though as long there was a clear 3 weeks before the trip – there was. This meant that Amy had to go straight on insulin when getting the pump, rather than spend a week using saline which some clinics do to get people used to using their new pump. Our DSNs confidence made us confident.
Amy would need to do a set change during the trip so would 27 days be enough to get used to doing this? By herself? Without us?

Negative press = worrying parents. Would the school still let her go?

In the news recently there’d been so many instances of kids being refused residential trips at the last minute that I attended a Parents’ Clinic run by the school, deciding to tackling this straight on.
I went in armed with articles such as ‘Sheffield schoolgirl with diabetes barred from trip‘ and ‘Diabetic lad is barred from school trip of a lifetime‘.
Their initial reaction was amazement, that schools would refuse to take kids with diabetes. I took that as a good sign.
Their official response came back a couple of days later: they just wanted a letter from the DSN a few days before the trip to say that Amy was fit to travel. They also wanted us to come in and discuss care requirements with the person who the designated pastoral carer for the trip.

The School’s Pastoral Carer

We already had great respect for Mrs L – the person assigned as the trip’s pastoral carer – as she’d helped our eldest daughter with some issues on her trip three years ago, so we were glad to hear she was going on this trip.
Jane went to meet her the day before the trip with a list of things to do, which featured a key message: you should not need to do anything except make sure she’s okay; you don’t need to inject her; you don’t need to touch her pump.
I felt it was important – after the articles I’d seen elsewhere – that the school didn’t feel like it would be a chore taking Amy on a trip and I didn’t want Amy to think that she needed to rely on others to manage her diabetes, which in turn would hopefully give her confidence. In general this worked very well, a few issues aside.

Three weeks to get the basal profile sorted

The DSN wanted 3 weeks between getting the pump and the trip so that adjustments could be made to Amy’s basal profile to get it right.
In turned out that 3 weeks was enough to get the basal profile as close as possible and more importantly make us confident enough to make slight tweaks ourselves.

Wednesday 17th July, Day one

Waking up at Stupid O’Clock

The coach was leaving at 4am. which mean at 3:30am wake up call. It also meant there was no chance of doing a set change that early in the morning, so one was done the afternoon before, with another one to be done on either Thursday on Friday, by Amy.
We knew that Amy’s basal profile was pretty good so didn’t feel the need for her to test her blood glucose level at such an ungodly hour.
Arriving at the school, there was a mix of excitement from the kids and anxiousness from the parents. They felt like I did three years ago when I packed my eldest off on the same trip. I found it hard to appreciate their fears considering everything we were now worrying about: if it all went wrong it literally could be life or death.
Still, I made sure Amy had her mobile so she could text me her blood glucose check results and ask for advice if needed. It was a long wait.

Diabetes? Here? Nah!

A key thing any parent would want for their kid on a school trip is that diabetes doesn’t feature very highly so we told Amy to enjoy herself, get the most of the the trip but keep safe.
And she did.
Whilst she never texted me her results until a lot later in the day she clearly felt in control enough to not need to call me either, which was great, if not a little concerning for an incommunicado parent.
Later in the evening she sent her BG results through:

Amy's first day BG results

Thursday 18th July, Day two

Lindt and excercise

Today was the day which worried me most: it started off with a visit to the Lindt chocolate factory and also featured a lot of walking and a climb up Koln Cathedral’s 509 step spiral staircase.
We exchanged a few early morning texts one of which from Amy contained ‘is it okay if I have some chocolate at the Lindt factory?’. Bless her, as if I’d say no, knowing that she’d been looking forward to this specific visit for months. I looked up some nutritional values on Lindt’s informative web site and text Amy back carb values for stuff she likes. At Lindt she bolused three times in the space of the hour long visit, something she would never have done with injections so YAY for the pump, it meant she really enjoyed the visit.
The Koln Cathedral visit didn’t provide any problems either.

Infusion set change – without us

Amy had done all of the set changes herself, without us doing anything but with us watching and encouraging. Before the trip she wasn’t fazed about doing the set change and unsurprisingly she did it without issue, but under the close eye of the school’s Pastoral Carer.

Count the boluses

I’ve said before that Amy hated injections so wouldn’t often choose to snack anything over 15g carbs, and even then only once between meals. So the pump has given her the ability to do this but maybe, just maybe, 10 boluses in a day is a little too much. Well actually no, it isn’t, everyone else was snacking and now Amy’s pump meant she could too, without worrying about soaring or dropping levels.

Today’s blood glucose levels

7.8, 14.9, 4.6, 8.3, 4.1, 5.1, 3.5, 5.9.
We can discount the 14.9 pre-lunch test as it was 70 minutes after the first Lindt chocolate and 20 minutes after the last.
This means she only went a maximum of 0.5 out of range all day.
I’d call that winning.

Friday 19th July, Day three

A morning of stress induced highs

This morning she’d woken at 6.6mmol, another great result.
The trip had been going so well for Amy, she was having fun and her levels were pretty great all round. Diabetes itself wasn’t getting in her way at all.
That was until it was time to pack up and one of her room mates got all stroppy and pushed the other room mate into a wall, causing an untold amount of stress and emotion. I wasn’t surprised to hear about this event as I’ve never understood why Amy is friends with this girl, she’s always be horrid to Amy, so why share a room with her? The other girl has been one of Amy’s closest friends forever and one we very much trust to look out for Amy.
I was surprised how the stress affected Amy’s levels, shooting up to 15.5 which took a couple of corrections to shift over the next few hours.
By 1pm she was down to a respectable 5.4mmol.

Amy, do you really need Pizza for lunch?

The kids had to buy their own food on the last day, all opting for Pizza. I knew that a combo-bolus would be required but we don’t eat Pizza much at home and hadn’t experimented with combo -boluses for it. She wasn’t keen but I managed to convince Amy to do a four-hour bolus; I knew it needed to be longer but not when she’s by herself in Germany. We decided we’d run the risk of being higher later on…oh how that came back to bite us.

The case of the too-short-combo-bolus, the coach trip and the over-zealous teacher

Following Amy’s Pizza was the long coach journey back to England, sitting aimlessly on a coach for hours and hours. Combine this with the pizza and it’s easy to understand why Amy’s BG readings went up to 13.9.
What we didn’t expect though was the lovely Pastoral Carer going a bit overboard. She got Amy to test for ketones and even though it was very low she got her to test again minutes later. Then another blood test, then another, then another.
She did 9 blood glucose tests within 3 hours and a few ketones tests too!
Clearly this was down to us not clearly communicating what Amy needed to do if high; we’d concentrated on the lows, not the highs. We’d spoken about ketone testing but somewhere the hypo-15-minute-rule and ketone testing rule got mixed up. For the record, I’d rather had an over-zealous teacher than one who didn’t care or check on Amy.
It clearly threw Amy off balance and made her panic a little, which in turn probably raised her levels higher. Since, we’ve had a chat about why she went high which has renewed her confidence in her management of her diabetes.

In short…

Friendship incidents aside, pizza bolusing aside, everything went perfectly for Amy. Diabetes never got in her way, or stopped her from doing anything, she did everything her friends did.

Going back to school – a Mother’s view

 

Nerves and reassurance

Amy was a bit nervous about going back to school but I wasn’t too worried as our diabetic nurse had reassured me that the office staff at Amy’s junior school were fantastic.
It was the start of the spring term and our life now seemed totally different.
 

Not much sympathy from my workplace

On the first day I couldn’t take her to school although I desperately wanted to, as I work in a preschool, my manager was off sick and the deputy manager was very unsympathetic. I remember clearly the deputy dismissing my worries as if Amy had a cold. She was annoyed that I had requested to leave work for half an hour at lunchtime to give Amy her injection and said “Oh well there’s lots of children there with diabetes, why can’t the office staff just do it.” I was angry and hurt that someone could be so unfeeling. My baby wanted and needed me there as she was frightened and anxious about injecting in a strange place. Kev worked from home and did Amy’s first injection in school as luckily he has a very understanding manager and can work from home if necessary.
 

Day two, a day off thankfully

On the second day I wasn’t working and arranged to meet our diabetes nurse at reception. I remember her explaining everything to the ‘office angels’ although diabetes wasn’t something new to them. One of the admin officers, who I had always been a bit wary of, was so calm and reassuring, she was used to treating diabetics as there were two others in the school already. Amy seemed reassured as she was shown where we could do her injection at lunchtime and she had her own tray to keep all her hypo stuff in. She seemed to be coping quite well and she almost liked the celebrity status: being allowed to jump the queue at lunch; leaving lessons 5 minutes early before lunch; being escorted by a friend for lunch; being allowed to take her toy cat, “Little B”, to every lesson.
 

The ‘office angels’

I remember by the end of the fourth day that I was overwrought; angry because of the unbelievably dismissive attitude of my deputy manager and exhausted as I had to be strong for Amy. The deputy had made a snide comment as I left at lunchtime and when I got to school the office staff were so nice to me that I just burst into floods of tears. The admin officer gave me a big hug which made me feel loads better and she reassured me that I was doing fine and Amy was coping very well as she had a lovely family supporting her. This is why I will always think of them as ‘the office angels’.
 

Winning the postcode lottery

Having talked to other mums of diabetic kids who have told me horror stories about their school’s provision, I realise how lucky Amy was to have developed diabetes whilst at Fair Oak Junior School. The staff at the school helped Amy to cope with a life-changing condition, making sure she was okay, helping with her injections, phoning me if Amy had hypos.
I have nothing but admiration and gratitude for them but especially my ‘office angels’. I will never forget their kindness.

Going back to school – a diabetic 10 year old’s view

 

In two minds

I was in two minds about going back to school: I wanted to see my friends as I hadn’t seen them for ages but I had several concerns about dealing with diabetes at school when my parents weren’t around.

 

My first moment in class

When I went into class on that first day I was escorted by one of the office ladies who told my teacher about diabetes. I didn’t think it was that serious. That morning we did an activity where you had to write down your New Year’s resolutions and then if you wanted to you could read them out. As I didn’t care if everyone knew or not, I wrote and said “to do all my injections properly”. Now, I wish I hadn’t because that meant I had to tell everyone in my class I had diabetes. I didn’t care about everyone knowing, not then anyway, but now sometimes I wish that not everyone knew as I don’t want them to think of me as a diabetic first and a child afterwards. Daddy says people see me for my personality first, not diabetes, but I’m not sure.

 

Injections

I wanted Mummy or Daddy to do all my midday injections with me but it was hard as they both had to work. My mum works at a pre-school quite close to my school therefore it was always her that had to come in for an hour during lunch. I was very happy that she could come in, so you can imagine how upset I was when she told me that she couldn’t do it on Thursdays. For the first couple of Thursdays Daddy come in to do the injections but he couldn’t do it forever as his work was 30 minutes drive away. I said to Mummy that she would keep saying the same for the other days until eventually she wouldn’t come in at all. And I was right. I started doing the injections with the office ladies, but I wanted my Mum. I felt like I had to control diabetes all by myself. I was scared.

 

Friendships

Luckily for me I have a lovely set of friends and that meant that this disease would not affect our friendship. All my friends volunteered to go to lunch early with me (out of kindness, not just because they wanted to go to lunch early) but I could only pick one, so they took it in turns. I am so glad my friends stayed by my side, it didn’t even occur to me that they might ditch me as a friend and it would have been a very big shock if they had.

 

Where’s my P.E. (Physical Education) class gone?

I was annoyed EVERY time I did P.E. (which was a lot) as I had to go all the way to the office and do a blood glucose test. If I was alright then I would go to P.E. but if I was lower than 12 I had to eat something before. Unfortunately I didn’t always know where P.E. was, it could have been the hall, the field, the upper school playground, the lower school playground, the millenium garden or even the running track. So I would have to visit every single one of those places and sometimes by the time I had almost visited them all, the class would have finished P.E. and be back in the classroom getting changed!