My last post talked about how we made the decision to get Miss Chief an insulin pump, rather than multiple daily injections, and this week sees the end of a long wait - we get our pump on Thursday!
But what exactly is a pump, how does it differ from injections and what's the big deal?
What is an insulin pump? As our educator puts it, pumping is just a posh way of delivering insulin. It connects to the body via an infusion set, which consists of tubing plus a cannula. The cannula is either a flexible Teflon needle or a firm stainless steel needle, with an adhesive patch and a plastic connector. The cannula goes into the skin anywhere you would normally inject. Insulin is always injected subcutaneously, i.e. just under the skin, and not intramuscularly and once the cannula is in you can barely feel it. The adhesive dressing secures the plastic connector in place and this is what the tubing is attached to. Tubing, and therefore the pump, can be disconnected and a small plastic plug put in its place, during certain activities, such as playing on the beach, or contact sports. The other end of the tubing connects to a cartridge of insulin which screws into the pump. The pump itself is about the size of two old cassettes, or just larger than a mini-disc player. Or in today's terms, a slightly shorter, thicker smartphone. Maybe if you cut your phone in half and put the 2 pieces back to back you'd be getting close to the right size and shape. It can be clipped onto your waist band, worn in a Lycra band against the skin under the clothes, or carried in a bum-bag style pouch over the clothes.
A steel cannula and infusion set
Steel cannulas are literally just pushed into the skin. Some come with an extra adhesive patch, called an anchor, connected via a short bit of tubing to the cannula. The main tubing then connects to the anchor. This prevents pulling on the needle if the pump is knocked or dropped. Teflon cannulas, being flexible, require insertion via a larger introducer needle and generally come with an automated insertion device. You spring load the housing, place it on the skin and squeeze the sides. The device is released and shoots the needle into the skin super quick. You then remove the housing, including the introducer needle and all that remains is the plastic cannula with its adhesive patch and plastic connector. In my limited experience these flexible needles are more comfortable. They can also be left in for longer - 3 days as opposed to 2 for the steel. They are prone to kinks, however, which can disrupt the flow of insulin. In an attempt to get Chief to have a needle in her tummy rather than her buttocks I made up a rule that Teflon cannulas go in the tummy and steel ones in the bottom. Despite the fact that the connector for the Teflon infusion set comes in a rather fetching pink, Miss Chief is adamant that she will only use steel.
How does it work? The pump uses only rapid acting insulin. You set up a basal rate and it delivers tiny amounts of insulin more or less constantly. Chief's starting basal rate is 0.2 units per hour. As a comparison she currently has 2.5 units of long-acting insulin twice a day. In addition to this, during set up you tell the pump how much insulin you think is required to bring her blood glucose levels down a certain number of mmol/l (correction factor) and how much is required to cover grams of carbs (insulin to carb ratio). Each time you check a BGL you enter it into the pump and it uses these settings to calculate whether a correction is required. If eating, you also enter the grams of carbs and the pump will include this in its calculations.
Pump with infusion set connected
Why do we want one? The insulin regime with a pump is very similar to the multiple daily injection (MDI) basal-bolus regime Chief is currently on but with what we perceive will be the following benefits:
Fewer needles: 1 every 2-3 days instead of 10-15.
Easier and more frequent corrections, especially overnight as it doesn't mean an extra needle. Hopefully this means less disturbed sleep patterns for the Chief too.
Smaller more accurate doses of insulin. Currently, we often have to decide between giving her very low carb snacks, an extra needle (which may require more carbs than we would ideally give in order to match the lowest possible insulin dose), or allowing her glucose levels to ride a little higher than desired until the next needle. The pump should remove this Sophie's Choice. Additionally, as the insulin is infused via a needle that remains under the skin she should get the entirety of doses; currently we find drops of insulin on the end of the needle and on her skin and we're never entirely sure exactly how much insulin she's had.
Having the pump calculate doses instead of us, saving us much time. We'll still need to measure BGLs and count carbs but won't need to worry about calculating doses. There are smart phone apps that will do this for you too but as we knew we were moving to a pump we never bothered buying and setting one up.
More accurate basal dosing as amounts can be temporarily increased or lowered according to needs, rather than staying in the system for 14-24 hours, which tends to lead to more conservative doses.
More flexibility with food amounts. Instead of having to guess how much Chief might want to eat before a meal we can input any extra food she ends up eating afterwards. Or if she is high before a meal we can correct the BG, plus give a small amount for food, adding the remaining amount after the meal according to what she has eaten.
Fewer hypos followed by highs when eating low GI food such as pasta. The pump has various options for delivering bolus (or mealtime) insulin doses. For example, you can opt to give a portion of your insulin with your meal, and then gradually deliver the rest over the next few hours without any extra needles.
More freedom with food at afternoon tea. Currently Chief is limited to extremely low carb meals at afternoon tea because by this time she is all out of lunchtime insulin. On special occasions, such as birthdays she will have an extra needle in order to enjoy some cake but most days if she has anything much more than 5g carbs without a needle she will have slightly elevated levels. Usually it's not enough to worry about but you wouldn't want to do it every day. On the pump she can have carbs if she wants with no extra needles.
There are downsides to using the pump too. For example, because there is no long lasting insulin in use, should anything go wrong with the pump you have an increased chance of elevated ketones due to not receiving insulin over an extended period of time. Therefore frequent testing is more important on a pump, particularly at night. We test 8-10 times a day anyway, and most nights, so it isn't much of a change for us. Some people experience kinks in the flexible cannulas. When high levels are noticed on a pump there is an added element of confusion in first determining whether there is a kink in the cannula or air bubbles in the line. There is the inconvenience of having to carry the pump around everywhere and remembering to reconnect if you remove it to take a bath. Also pumping is more expensive. Whilst our private health insurance will cover the cost of the pump, we need to pay a fee, albeit subsidised, for cartridges and infusion sets costing approximately $30 a month. It's more stuff to store in the cupboard. And yet we still need pens and needle tips as back up in case anything goes wrong with the pump.
I am pleased to have had the last 6 months learning the ropes with MDI though. It has taught me a lot about diabetes and how to manage it and helped immensely with preparation for the pump. I feel comforted that at any time we can ditch the pump and return to needles, be it for a day, a week or longer and we have the confidence to do that.
Whilst I am extremely excited about this new phase in our diabetes journey I would like to point out that pumping isn't for everyone, and that's fine. There is no perfect solution that doesn't involve a working pancreas and it is perfectly possible to get excellent control on MDI. I have an amazing friend who does just that and we have been slowly getting better at it, resulting in much better behaviour from the Chief. I have even been tempted to think that pumping is a lazy way of dealing with diabetes. But at the end of the day diabetes is hard work, no matter how you manage it. And when you have other children, a house and a career to manage too then why not make life a bit simpler if you can. Pumping may not be the simple solution for everyone but I'm hoping it will be for us.
Last week we had our last of 3 insulin pump education sessions. This Thursday we head off to hospital with little Miss Chief in tow and come home with a $9000 life saving insulin infusing super computer which the Chief will carry with her at all times. We will learn a new way of dosing and managing insulin and spend the following few weeks doing a lot of testing and tweaking to get it set up just for her.
When our lovely diabetes educator, Claire, first told us about the pump, during those first crazy days in hospital, I wasn't particularly interested. The thought of my daughter being permanently attached to a life-saving medical device was extremely confronting. It felt like it would be a constant reminder of her condition. I liked the fact that we could just inject her and forget about it. I really couldn't understand why anyone would want a pump.
Of course they're such a big technological advancement in the field of diabetes and are becoming increasingly popular that I couldn't just forget about them. As I was exposed to more and more T1 families I noticed that a considerable number of them used pumps. As our own family members became more aware of the disease they would say things like "so and so has a pump. Have you heard of them? Would you get one?"
One of my initial concerns had been that it wasn't really my place to decide something so huge for someone else even if she was only 3 years old. I wondered how it would fit with her clothes, especially dresses and whether it would be a total pain on one of those days where she's playing dress ups or just getting changed 20 times. By the same token, it didn't seem fair to rule it out for her without introducing the idea to her and giving her some say in the matter. And as time went on I realised that injections don't allow you to forget about your diabetes. Anything but. It's constant and with injections any time you want to eat you have to figure out whether you should or shouldn't eat carbs or dose some insulin.
As I mentioned in a previous post, at the end of last year I took Miss Chief to a JDRF-sponsored family bowling event and we met a little girl, Miss M, just a little bit older than Chief who had recently started using a pump. The two girls became friends and Miss M and her mum showed us her pink Animas Vibe pump and how it worked. Miss Chief marvelled at how little Miss M was able to share a bag of teddy bear biscuits with her friend whilst her mum casually punched her BGL and 8g carbs into the pump. Meanwhile Miss Chief and I wandered around the bowling alley looking for a quiet spot for her to lie down and bare her buttocks for her injection. Her lunch was carefully planned to match her dose and at this time I had only a fair idea about carb counting and very little clue how to match insulin doses to carbs. There was very little room for flexibility. As we found a quiet comfortable sofa Miss Chief said to me, "but Mammy. I don't want my injection. I want a pump." And that set the wheels in motion.
By the time I told our educator and paediatrician at our clinic visit a few weeks later that we wanted to discuss moving to a pump, we were getting pretty good at carb counting and weren't far off calculating an insulin to carb ratio which would allow us to give more accurate doses. This doesn't mean that the pump was no longer useful to us. On the contrary it meant that we were well on our way to pump preparation as accurate carb counting is essential to pumping. The medical team were very supportive of our decision even though I wasn't 100% certain of it myself. We were warned we could wait up to 6 months to get the pump due to limited clinic times for pump education and start sessions so I got us onto the waiting list so I could spend at least part of that 6 months figuring out if it was the right thing to do. The paediatrician signed the approval forms as soon as I told her we were thinking of it, saying, "It'll be great for you guys. I'll sign this now so I don't hold you up later if you decide to go ahead. Remember, it's a lifestyle choice and you, as the parents of a 4 year old, should be the ones making the decision, not her."
To a certain extent I agreed with the doctor as we are managing Chief's diabetes for her, but at the same time a diagnosis of diabetes had meant such a huge change to the Chief's life and we couldn't control or change that. I didn't want to introduce another unwelcome change, one that we did have control over, just as she was getting used to things being the way they were. I spent the next few months making sure that it was the right decision for all of us. This meant not just researching the different pumps but talking to other parents, especially of girls, about how their children wore their pumps with different types of clothing, looking at different infusion sets and cannulas and reading books about pumping insulin. The books were a great source of information on how to manage diabetes and got me, as our educator put it, "thinking like a pump."
Chief and I try out cannulas.
Over the past few months we've attended information evenings and played with different pumps. We settled on the Animas Vibe, primarily for its waterproof feature. I met some amazing mums who allowed me to bolus their children , ie administer their insulin via their pump. Map Man and I have each tried a couple of different cannulas and even the Chief has tried a steel cannula and decided that's what she's going to use and there's no need to try again until she gets her pump. Fair enough. I can't believe it's come around already and it's fair to say we're pretty excited about it. Only three sleeps to go...
Apparently in the world of D there is an ideal number that all diabetics want to see on their meter. This number is so sought after that there is an entire Facebook group dedicated to people posting photos of their meters displaying this number. The group is called The 5.5 or 99 Club, so called because 5.5 mmol/l (or 99 mg/dl if you're American) is that much desired number.
Well, guess what? We got our first 5.5 today. Yes, here's proof:
I do actually get excited about this sort of thing. Chief has spent so much of the last 6 months with readings in double figures that I simply love seeing 5s, 6s and 7s on her meter. And well, I really didn't think I'd see a 5.5 until she had her pump (yes, yes, more on that later, I promise).
This beautiful photo of the perfect number belies the morning we had getting her there, however. I would love to say "it started off as any other ordinary day" but it didn't because last night we had pasta. Pasta, the one thing, other than eggs, that everyone in the house eagerly demolishes in silence, and it is a scourge on the levels of a Type 1 Diabetic. Sad, but true. (Yet another motivation for getting a pump: the combo bolus! Yes I realise I am speaking double dutch. All will become apparent in due course. Just not today.)
So last night we had pasta, and rather than give her all her insulin at once and have her hypo after dinner, as is usual, or delaying her insulin and having her go hyper after dinner, or end up having to give her two needles, which nearly always happens with pasta because she always goes high later in the night, regardless of whether she's gone low after dinner or not. Rather than all that we tried a new tactic, based upon the advice of a very knowledgeable friend. This friend slightly reduces the rapid insulin (to avoid a hypo) and slightly increases the long-acting insulin. Previously we haven't been game to do this as we didn't give Chief any long-acting at night but as she is emerging from honeymoon (i.e. producing little to no insulin) we have been playing around with long-acting insulin at night and felt more confident in doing this.
Apologies for getting technical. To cut a long story short, there was no hypo, then a not unsubstantial rise later at night, followed by a slight drop before breakfast. But she still woke a bit high and needed extra insulin to bring her back down. She also had low GI porridge for breakfast. A ton of it. And fruit. That girl could eat more breakfast than a sumo wrestler. I gave her 8 units of rapid insulin for breakfast (yum!), which I think is a lot. Occasionally she might get 6 or 7 but usually it's around 4 or 5. I don't think I've ever given her as much as 8.
More than 2 hours later I tested her at morning tea time as I dropped her off at daycare. She was very high, around 20mmol/l. I knew she still had active insulin, but probably also had active carbs. Her morning tea also contained carbs so I had to do a quick calculation and rethink and completely change her daycare meal and insulin plan. It was slightly stressful as I had to replan and then instruct someone else on how to manage her, and I wasn't sure whether I should be taking her home and monitoring her there. Anyway, I calculated that she had almost 3 units of insulin left in her system and that she might end up crashing down but by then it would probably be lunchtime and she could just eat lunch. I checked her again half an hour later after I'd settled Happy in his room and done my calculations, quickly swapped her very low carb afternoon tea for her morning tea so she could eat with her friends and instructed the teachers to call me after each test for the rest of the day.
The next test was when we got this beautiful number. I could have jumped for joy. A few months ago I would surely have stuffed this up and ended up with high numbers all day. Her teachers are much more confident now too, which helps matters immensely. She had her usual food and insulin at lunchtime and at afternoon tea took an extra needle to cover the extra carbs.
This is by no means a typical day. Most days the same thing happens and it's all reasonably predictable. But this is fairly typical of the kind of curve balls diabetes throws at us and how we need to be able to think on our feet and be constantly mentally aware. This is why us D-parents are always so exhausted, drink lots of coffee and are incapable of holding a normal conversation. Just so you know.
Believe it or not there are actually one or two good things about having had diabetes batter its way into our lives. One of those is the amazing people that we probably wouldn't have otherwise met.
We have been very fortunate to have met a lovely family with a 5 year old daughter diagnosed about 1 year ago with Type 1 diabetes. She and Miss Chief hit it off right away. By the end of their first meeting, at a JDRF-sponsored bowling event just before Christmas, they were hugging, dancing and spinning each other around. Her mum, Angela, and I also became friends.
Miss Chief and Miss M hitting it off
When we met, little Miss M had been using an insulin pump for a few months. Her mum found it difficult to get cute accessories for it. There was plenty of stuff available overseas but then the delivery costs were a bit much. So she decided to start up her own business, importing items in bulk and then selling them on with a much more palatable local Australian postage rate. After months of gathering products, photographing them and getting a website set up she has finally launched Pump Boutique.
I have already purchased this cute little Tinkerbell pump pouch for Chief (yes! We're getting a pump!! More on that later). There are a few other things I have my eye on and as the business grows more products will be added.
Angela says that she likes to give Miss M an element of control over her diabetes and I agree that this is extremely important. Every day she gets the choice of wearing her pump or having injections. I'm assured she ALWAYS chooses the pump. She then gets to choose how to wear it, whether it be in a lycra band that sits close to her body, in a fun pouch such as this one, in her pocket or clipped onto her waist band. This is one way we can make diabetes fun for our kids and give them back a bit of freedom and flexibility. This is particularly important for pump wearers as they have to carry their pumps with them all the time, so why not make it a funky and fashionable accessory. Incidentally, Chief and M both have pink pumps! Girls will be girls.
Pump Boutique also sells items for non-pump wearers, such as this cool heart bag for carrying your meter and jelly beans (plus insulin pens, spare pump infusion set, purse, phone or keys). I have my eye on this one too.
So whether you or a family member or friend lives with diabetes, or you just feel like buying Miss Chief a pump start gift, please have a browse around the site and support this new venture by sharing the link with others. Angela welcomes any feedback you have on the site as it is still in its infancy. You can let her know via her Contact Us page.