The Insulin Pump (blog 6)

Two weeks into my month of insulin pump training I'm wearing the pump for a week. Saline solution is used instead of insulin or I’d die!

An insulin pump delivers a continuous flow (basal) of rapid acting insulin. The insulin is delivered through a cannula under the skin. The insulin cartridge and cannula are changed every 2-3 days or more using a needle insertion in a different position. Insulin is given manually for the carbohydrates in food, drink and or to correct high blood glucose (bolus). It is nearer to how the pancreas works than injections.

Advantages of an insulin pump:

· Ability to accurately deliver 1/10th of a unit of insulin

· Tighter blood glucose control

· Reducing episodes of severe hypoglycaemia (low blood sugar)

· Reducing wide fluctuations in blood glucose.

· Helping manage the "dawn phenomenon” (the liver releases glucose)

· Different levels of basal and bolus insulin at different times of day

· Split insulin delivery (combo bolus) to suit the type of food eaten

Because the pump has a lot of features to control the blood glucose levels better it is more complex to use. I’m finding it quite stressful on top of the carb counting (and every other little thing that affects blood sugar 24 hours a day such as exercise, weather, illness, growth, excitement, worry etc.) and the insertion is awful. But I'd swap with Beren if I could so I could risk my own life instead of his with my insulin decisions every day.

Because of his pump; anyone who looks after Beren must have intense training given by the hospital. Only my partner, school and I are able to care for him for this reason.

In a child as young as Beren the pump can be inserted in the tummy or lower back just above the bottom where it’s fleshy. It must be moved around his tummy then moved around the bottom area to minimise scar tissue building up which affects the absorption of insulin.

We started on his lower back and he was really good having it inserted considering its painful. It’s much more painful than an injection because of the length and width of the cannula insertion needle. I am lucky he is so brave and tough. Some children need to be pinned down and it’s so traumatic.

The first night he went live on the insulin pump I wasn’t allowed to use his CGM (continuous glucose monitor) so the readings didn’t influence what actions we took so the doctors could calculate the settings. I had to test his blood sugar with a finger prick every two hours all day and all night for 48 hours!

The control I have of Berens blood sugar with the pump is much better than it was with injections but we still can’t seem to get him under control. He’s had extra tests to see if there is anything else complicating things but nothing has been found.

At first all I was worried about was the hypo’s (low blood sugar). If his blood sugar level drops below 4 his can fall unconscious and untreated will die. Hypo’s can happen on a daily basis. But now I constantly worry how often his blood sugar goes dangerously high (hyper) and stays there. Left high for long periods of time leads to long term damage. When blood sugar is very high (I’m talking super high above 23 he should be below 7) Beren’s blood will thicken and is harder for his heart to pump round his body. When he is very high it takes hours for the insulin to bring his levels down. I worry his heart can’t deal with the pressure of trying to pump his thick, sticky, sugary blood around his body and all the permanent damage it is doing to his organs and the future complications or him going into DKA (diabetic ketoacidosis).

Beren often gets leg pain in the night. This is another worry as it could be caused by prolonged high blood sugar (diabetic nerve pain) which causes bad circulation and permanent damage to the nerves. High blood sugar also means that diabetics can't heal wounds as quickly.

I hear stories all the time of children dying of DKA and even blood clots, heart failure or severe hypo's (low blood sugar). Just to mention a few.

I struggle daily to keep his levels from getting too high or dropping too low. I’m either topping him up with sugar to prevent a hypo or giving more insulin to correct a hyper even through the night. I wouldn’t be able to do this safely without the self-funded CGM.

When it was time to move the pump site to his tummy he suddenly put up a fuss and wouldn’t let me insert it there. He had to be pinned down which just makes the whole thing more traumatic and heart breaking. After a few times of having it inserted there he let me do it without being pinned down but there was a lot of moving away from me, putting his hand in the way and tears. It turned out that even when he let me he can’t help but tense his tummy as its inserted. So the cannula doesn’t go in properly which means the insulin doesn’t go in and then we have to do the whole set change again! I now have to try to do it when he’s asleep. Of course he wakes up with the pain but he doesn’t have the chance to tense his tummy because he’s not expecting it. This has to done every three days or more and I dread it. 9 times out of 10 he wakes up when I try to get him in position. I then have no choice but to insert it in his lower back. So the scar tissue there isn’t having time to heal.

A few weeks later I was queuing at an ice cream van by the beach. Beren had chosen a 99 so I was estimating the carbs. This is never good but it was a treat and I want him to be like every other child having an ice cream at the beach. But he isn’t like any other child. We have to check his blood sugar, work out carbs and enter in the pump first. If his blood sugar was too high he wouldn’t be able to eat until it came down. He just deals most of it without a fuss and is a very happy boy always laughing. Some adults lose their temper or act strange like they are drunk when they have high blood sugar but he seems to cope quite well just more boisterous!

A man nearby asked me if Beren was type 1 diabetic? I answered yes thinking he must know what an insulin pump is. He then said ‘have you tried cinnamon? It will cure his diabetes in 4 weeks’. I replied ‘but he needs insulin to live!’ He said ‘yes I know but try cinnamon’. I felt like screaming ‘his bloody pancreas doesn’t work I don’t bloody think cinnamon is going to kick start it!’

What?!

You can visit the rest of my website and read my other blog posts here www.tinyurl.com/leannelochhead.

I am raising money for JDRF (Juvenile Diabetes Research Foundation). My song Guardian Angel was wrote for Beren and released for download with proceeds to JDRF. Awaiting the accompanying video that will have an insight into the condition and the warning signs.

I also have a Just Giving Page.

Thank you for reading and feel free to share.

Leanne x