I’m excited to announce that after 3 years of trying, I’m one exhausted but proud mother-pumper. On 27th March 2019, I was hand delivered a Medtronic Mini-Med 670G (a medical device that’s marketed for diabetics but I’m using to treat Addison’s Disease by pumping the steroid hydrocortisone). I know, I know, it’s been two months already and you’ve been dying to see the little guy: I present to you…Phillip the pump!
Thank-you for your well wishes and curiosity about Phillip. I’m going to do my best to answer all of your questions. However, I am keen to balance out the “mother-pumping is all rainbows and lollypops” image that’s so often projected on social media with the reality of living with a baby brick leashed to your body 24 hours a day.
What’s he like?
I couldn’t resist another photo. At least I left out the rainbows, lollypops and little sign saying “mummy’s favourite boy”. What a lovely little…um…brick Phillip is. I was told by the pump company to expect that Phillip would be the size of a pager. To this description I asked “wot dis?” The closest I’ve ever come to a pager was watching the ’00s TV medical-comedy Scrubs.
In reality, Phillip is better described as a short fat mobile phone – he takes after his mother-pumper in that regard. He needs to be chunky in order to carry a small bottle (reservoir) in one side and a AA battery in the other.
How’s he behaving?
Most people assume that Phillip is smart enough to sense what level of medication I need during the day. Alas nope, he’s not that advanced yet. Look, I’m sure that the engineers that designed him would excitedly tell you that Phillip contains a piston that allows the continuous and precise delivery of itsy bitsy tiny weeny amounts of liquid medication. However, the clue is in his name; Phillip the Pump just pumps.
It’s up to me to tell Phillip how much to pump and when. Luckily he’s very obedient; I just need to know how to push his buttons.
I’ve set Phillip to work 24 hours a day, at 7 different rates depending on time of the day. At the push of a button, I can alter his routine daily work rates (basal pattern), switch to a different daily work routine (e.g. sick rates), set him to work harder for a few hours (temporary basal pattern), or give myself an immediate shot of medication (a bolus). It’s pretty cool.
How’s he feeding?
The process of making up Phillip’s medication is fiddly. It involves mixing what looks like powdered milk into water, injecting extra water (sterile water) into the vial because it comes in the awkward ratio of 2ml water to 250mg medicine, and drawing up the liquid medication into a scary stabby thing (needle and syringe).
At my current daily usage of medication (solu-cortef), I fill up and switch in a new bottle (reservoir – see picture above) every 5 days. That intimidating looking blue plastic lid allows a diabetic to simply stab a vial of insulin on the top and the insulin magically flows into the bottle.
Since my medication comes in a different style of vial (an act-o-vial), I remove the blue cap thingy and inject the medication straight into the top of Phillip’s bottle with the scary stabby things.
As a new mother-pumper, I have made many glorious mistakes attempting to fill-up Phillip’s bottle (squirting solu-cortef around the room was a highlight). But once the bottle is filled and inserted, Phillip feeds me without any fuss.
How attached are you to Phillip?
I’m pretty sure that the pump’s design engineers put most of their efforts into making Phillip himself wonderful. The question of how to attach Phillip to an actual living human was perhaps secondary because their MacGyver-style solution involves a plastic tube, sticky tape and a length of hose.
This tiny plastic feeding tube (cannula) sits underneath my skin. How does it get underneath my skin?
It involves a sharp pointy thing (introducer needle) and a device (the pink and white plastic thing above; automatic inserter) that whacks the feeding tube, needle and tape (infusion set) against/into my skin.
Yes, whacking stings. No, I usually can’t feel the feeding tube post-whacking unless I hit a blood vessel or I agitate the plastic dooby that sits on top of the tube (no idea what this is officially called). Turns out that I’m skilled at hitting blood vessels and agitating the plastic dooby.
The plastic feeding tube is held in place on my skin with sticky tape (adhesive). My skin hates this sticky tape as much as it hates all sticky tapes – with an angry rashy passion. I get to enrage my skin every 3 days by ripping off the sticky tape, and whacking in a new feeding tube. I have a trail of angry red circles across my stomach.
The feeding tube is connected to Phillip’s bottle via a length of baby-sized hose (line). Though I can unclip the hose from my stomach for short periods, I receive no medication during this time. I’m practically leashed from my stomach to a baby brick 24 hours a day. It’s only mildly less annoying than it sounds and it’s definitely not kinky (the hose has magical non-kinking powers).
How are you going carrying him?
In the initial design meeting for Phillip, I think someone would have asked the engineers – “this might be a silly question, but how might a patient go about carrying a pump all day and all night?”
My guess is they responded: “easy, stick it in your pocket”.
The only woman in the room burst out laughing: “Ha! Pockets? Women’s clothing doesn’t have pockets and if it does, they are fake pockets that don’t support the weight nor thickness of a baby brick.”
There was a brief pause, then “no problem”, said another engineer, “we can give you a belt-clip”. And that’s how Phillip was delivered to me – with a belt-clip (eyeroll). Of course belts and waist bands are almost as elusive or flimsy as pockets in women’s clothing.
Luckily there is a market for pump accessories run mostly by mummys of diabetic child-pumpers. I usually carry Phillip in a stylish lycra band worn high on my waist. It keeps him clear of my clothing waist bands and I avoid smothering Phillip when sleeping.
Working out how to wear Phillip with different clothing (I’ve packed away half my dresses for now) and for different activities (I’m not sure how to swim or run with him yet) is a work in progress.
How are you going? How great are you feeling?
People started asking me just how fantastic I was feeling and when I would be ready to go on the conference circuit singing Phillip’s praises from day 1, hour 1. You can read about my first days with Phillip here.
At even two months into having Phillip, it’s very early days. I’ve had a lot to learn. I am still establishing routines. I am experiencing a *few* teething problems.
Plus we’re trying to get my initial medication levels down (this could takes 1-2 years), and my body is recovering from 7 years of unnatural cortisol levels, disrupted sleep and severely reduced function/activity.
I can tell you that the last couple of months have been the some of the busiest, most active and exhausting times of my life yet I haven’t felt as sick as I did on tablets. When I went out for a walk the other day, for the first time in years I felt the need to take music with me, and I returned home singing and dancing. Sometimes you don’t realise what you got – not until it’s gone, but – until it returns.