Diabetes is a bit like that, but on an ongoing daily basis. #2 cannot leave the house without thinking about insulin, Blood Glucose Level (BGL) monitoring equipment, spare needles, hypo treatments and so on. Life is about constantly steering the ship on a level course, making minor adjustments to deal with side winds or currents (in reality high or low BGL's) and requiring the equipment to do that.
#2 had elected to have a pump fitted, some time ago. Whilst her diagnosis is fairly new, the 4 or 5x per day injections (so called Multiple Daily Injections therapy) was not an easy thing to deal with day in and day out, and the idea of just having a small device attached to her discreetly, injecting insulin every 3 minutes, was more attractive.
The human body is quite remarkable (I am living proof of that having put my body through hell in various different ways and still being able to do what I do now), and creates a background insulin level on a 24 hour basis. The body produces this background insulin rate according to that person's particular metabolism - at a rate in tune with the circadian rhythm. At mealtimes, or perhaps when having a snack, the pancreas will also produce an insulin spike. Modern Diabetes therapies normally consist of a long lasting insulin injected every evening in the same dose every day, and lasting for 24 hours, as well as having a fast acting insulin injection with every meal - the size depending on the meal taken.
A few years ago, the medical profession developed a pump mechanism whereby a reservoir of fast acting insulin could be held near to the body and attached to the body with a tube via a catheter, and little bits of insulin could be released every 3 minutes. The pump could be programmed to released different amounts of insulin throughout the day according to that person's particular rhythm. Simultaneously, the pump enabled the wearer to plug in a certain amount of carbs into the interface on the pump, and the pump would release an appropriate amount of insulin, again allowing for different ratios of carbs to insulin depending on the time of day or night. Stop me if I'm boring you.
Pretty much on arrival to Lenval, #2 had a little dollop of anaesthetic cream applied to the left of her stomach, and an hour later the catheter was fitted. No pain was felt, and the next thing was to program the pump. I had previously worked out various doses and so on based on #2's Total Daily Doses of insulin, but the Dr's had a previously drawn up schedule and between us we managed to plug in a basal and bolus programme. "Basal" being the name given to the 24 hr background dose, and "Bolus" the name for the manually dialled in doses with meals and snacks. #2 was very excited, and I think relieved, as insulin to her so far had just been a whole heap of needles and pain, and she was worried that the scarily long needle with which the catheter was injected, would be similarly painful or even worse. In the event, it was painless due to the cream, and now no more injections.
The rooms on the ward were set up for 2 children and 2 parents per room, with a shower / toilet cubicle en suite. Not too bad really, although when we arrived we disturbed the peace of a very sweet boy who had gastro issues, and his parents. I got speaking with the boy's mother, and she mentioned that he was a haemophiliac - no warning and no history in the family, and he needed an operation to remove a small growth internally - being a haemophiliac meant that this was vastly more complicated. The boy was clearly in some pain and had been in the hospital since the day before, but he went off to for his operation at around 4pm. In the meantime, #2 and I amused ourselves with downloaded programmes on the iPad, books, homework and some games. Every half an hour or so we would be visited by various professionals - the very lovely Dr Gastaud, #2's diabetic specialist Dr; a dietician who gave us similar advice to that we had received at the Diabetes UK weekend; the nurses to check #2's BGLs and whether the doses were appropriate; Dr Grenouille, a clown "Dr" that made balloons and told awful jokes and so on. #2 got lunch given to her and Mrs R had thoughtfully provided me with a salad, and that gave us a chance to practise dialling in a bolus dose as well as calculating the carbs. The nurses had helpful lists of carb content for the meals that were provided to the kids, and the staff had weighed the portions such that we could calculate the content ourselves.
In the evening, I was provided with a pull out plastic camp bed, with plastic pillows (real plastic too - none of your imitation stuff), and I had a sleeping bag. #2 amused herself by playing with the settings on her bed - up, down, legs up, head down, head up, legs down, sides up, sides down, etc etc. Perhaps one of the best diversions provided by the hospital for kids!
In due course the boy came back from theatre and to the palpable relief of his parents, everything was absolutely fine. Unfortunately the pain continued and he was still on various drips (more or less positioned 2 cm's from my head, once I was installed onto the camp bed) to manage the clotting of the blood and his pain relief, but the polyp had been removed successfully and there were no subsequent issues.
We trotted off to the nurses' station to introduce ourselves to the new shift, and then dial in a new bolus. We also went from a temporary basal rate to a more permanent one, as the previous night's long lasting injection had worn off by then. Then the fun began.....
The little boy's underlying condition meant that the nurses had to check his vital signs every 2 hours or so. Because #2 was new to a pump, the nurses also came to check her BGL with a finger prick check every two hours or so. Unfortunately this was not always simultaneous, and the nurses on the Thursday night were not that practised at fingerprick tests, so the pain level for #2 was quite high. We were woken every time.
The drips, above my head, for the little boy, were also having a problematic night, screeching alarms due to blockages or needing to be changed, and in trooped the emergency team to flock (around my head) to deal with the equipment. In the meantime, the (genuine) plastic pillow came with me every time I sat up or turned over, because it was stuck to my face.
I awoke the next day at 8am as the new nurses came in to check vitals, and to ensure we put the camp beds away before the various Dr's came to do their rounds. I felt like I had been on a 3 day bender. #2 was similarly tired, although in pretty good spirits as her friend - another T1 from MC - had promised to come and visit that evening to break up the tedium. We had concocted a plan between us to escape for the evening and meet her friend at the new Hard Rock Cafe not far from the hospital, for dinner that evening. We added several thousand forms to our already onerous paperwork sessions, and had another educational session on Ketones with the diabetic nurse, that morning.
Ketones occur when a diabetic's BGL is too high for too long, and they can be toxic. The treatment, if not too far advanced, is to administer more insulin. Because of the vagaries of the pump, blockages or mechanical issues can mean that although you think you are having the right dose of insulin, you may not have been having any insulin for a while and you can get Ketones building up in your blood. We had read about Ketones before and had been educated about them at the Diabetes UK weekend, so were familiar with various treatments and doses. We were given a monitor to borrow, and prescribed one which we will keep - when it arrives. It works the same way as a BGL monitor - fingerprick, and is measured in MMOL, similar to the way that we measure the BGL (although France use MGDL for BGL, they use MMOL for Ketones and for the averageBGL called the HBA1C - go figure).
The little chap in the bed next door was taken off his drip, and was in visibly better spirits. I had brought a couple of plastic gold medals with me, and gave one to him and one to #2 for being so brave, and then ensued a paper airplane making and flying competition, until his departure in the late morning. #2 and I were praying for a private room for the rest of our stay.
#2 had one crashing hypo in the afternoon where she had had quite a high level, and then less than an hour later was hypo. She then created that
Mrs R visited briefly with supplies (thank goodness - a pillow!) and then we were more or less left to our own devices for the afternoon, with the occasional visit from the nurses to check BGLs and so on, and before we knew it we were released with a 3 hour pass to go to Hard Rock Cafe!
Whilst the pillow provided me some measure of comfort, we were still woken every 2 hours for the BGL checks and #2 also had to have 2 extra bolus' in the night due to high BGLs, On discussion with the Dr the next day, we decided to leave the doses as they were for the time being, as life in hospital is pretty sedentary compared to life outside, although we did put in place a plan to change doses on our return home, after a few days of checking BGLs. #2 successfully changed her catheter herself with no help from the nurses, and even showed them a neat little trick which helped fill the insulin reservoir with small and not so strong hands. Gasps all around, and even more so when she was asked whether she was a long term diabetic and had perhaps been on the pump previously.
Since discharge, although we have had more sleep, we are still having to check BGLs at around 11 and then at 3am. #2 seems to confound the perceived wisdom that BGLs fall in the night as hers seems to rise. On the first night, Mrs R had a defcon 1 alert when #2 was in the Ketone zone. Cue scrabbling around in the dark for the freshly minted Ketone monitor and test strips...and then a new battery (and not a nice simple AAA, no, one of those pesky CR2032's) just what you need at 3am. Fortunately the Ketone level was nice and low, and we merely dialled a corrective bolus and went back to sleep - after a 45 minute cooling off period!
We have adjusted doses and are having home visits from the nurse to monitor the catheter changes, but touch wood whilst she tends to be a little on the high side, we are gradually getting the hang of the pump, and gradually shifting the doses. I am looking forward to not having to do the 3am shift - I thought I had left nappies and so on behind, but I am equally grateful that I only had 2 nights in hospital - something to be said for preparation after all!