I've come here a few times to update since last week and then, like a teenager refusing to acknowledge that there is life outside the duvet, thought better of it and disappeared back under the covers. Not, of course, because I have any type of warm, cocooned feeling from our hospital room that I'm reluctant to leave, but because I've just had nothing positive to share with the world outside. There is just a whole load of nothingness. Nothing has happened, nothing has changed and whilst nothing to some people is a good thing, as far as getting Dominic home it's a veritable disaster.
Remember my last post about not wanting to count chickens? Well the chickens well and truly upped and jumped out of the window, leaving us with aspirates that started climbing again and me tired, despondent and lacking the motivation to do much more than separate the overtired, bickering children (who have been spending long days on the ward with Dominic who is now not allowed to leave his room). Apparently, and bizarrely, after much debate amongst play therapists, nurses, doctors and microbiologists it has been decided that he will never be allowed to leave his room for as long as he is a patient at Great Ormond Street. It's not for antisocial behaviour or for his own safety or anything as reasonable as that, but some because of some bizarre policy that means because he has tested positive for a normal bowel dwelling bacteria at some point at the beginning of 2009 he has to have three clear poos (fine), not have had any antibiotics for 6 months (again, that box is ticked) and not have any indwelling devices (not so fine). Now if you look at Dominic's little body it is littered with devices, all of which dwell-in him and none of which we are likely to remove in the short, middle or long term. This means that Dominic, despite having nothing to pass on to other people, is considered a threat and is banned from playrooms, the activity centre… well pretty much anywhere. Explaining this to him is near impossible of course because it doesn't make sense to even the most reasoned of people, so there is no way an almost four year old is going to have a rational reaction to having all amusement taken away. To say that the days within the hospital have lengthened is just a teensy bit of an understatement.
So anyway, I've sat on my bed sighing a bit and feeling tired and unmotivated (not that I'm entirely sure what I should be motivated to do being stuck in one room) and I didn't want to inflict that oozy grey cloud of miserable nothingness on anyone else, so I have spent an unproductive week doing a lot of sitting around being unproductive. As miserable as Dominic and I have been, the thought of spending day in, day out doing the same is a depressing one, so I have actively been avoiding mulling over that reality to the best of my abilities. There is the very real fear that facing in up to the possibility of months more of this I'd be transformed into a wailing mess or start gibbering and running up and down the corridors blowing raspberries at the family who insist on wandering past our room and pausing to stare in at us like we're exhibits at the zoo.
To effectively avoid a real issue however means you have to find something else to focus your frustration on. Some people pick the people they come home to at the end of the day, some people find things to blame on the dog, others curse the people who are just so irritating on the train on the way to work. For me it's the hospital towels. If you can have an inanimate nemesis then the small, scratchy fluff machines are mine. Let me say as an aside here that the one advantage to being in hospital is the unlimited access to clean sheets and towels that someone else has to wash. Sharing a room with one child that finds some way to leak on clean sheets at least once every few hours, or children who deem cleaning their faces to be smearing the food that was all over their mouths onto the closest clean white towel means that I concur that for that reason, and that reason alone I admit I am grateful to the NHS for their towel and sheet service. For every other towel related encounter, I want to curse the ground the towel and sheet washing people walk on.
The hospital towels seem to be standard issue in the NHS. Small, scratchy and an ability to cover you with white fluff that sticks to you like glue the second you dare to go near your skin with moisturiser. One naive, sleep deprived morning I went to grab some more towels having mopped up another Dominic leak with the ones I had. Imagine my delight to see a small selection of pristine, super fluffy, hole free towels amongst the pile. I gleefully scooped them up and skipped back to my room. They were almost too nice to throw on the floor to catch the tidal wave of water that is inevitably formed when you attempt to shower in the smallest bath you've ever seen with no shower curtain. I hung up the others (you need more than one as they are like drying yourself with an over sized flannel) and went ahead and had a shower.
At first I found the result of drying myself confusing. I was indeed rubbing a towel along my arms, but all I actually seemed to be achieving was moving the water from one end of my arm to the other. I was getting increasingly frustrated. Were these the first water proof towels that the NHS were testing? Then downright irritating, as not only was I not dry, but now I was wet and covered in a thick layer of white fluff. Attempting to put any moisturiser on was futile, it merely gave the fluff an opportunity to form little fluff gangs, and after throwing the towels on the floor with utter contempt I determined that the only reasonable conclusion that I could possibly come to was that the hospital towels were the reason I was so utterly miserable and if they would just sort them out all would be right with the world. I ended up having to re-shower and drip dry, which trust me takes a while in a steamy, windowless bathroom where you can't open the door for fear that you'll flash the rest of the ward. It wasn't until much later when the mirror had de-steamed and I'd already paraded around in front of most people on the ward did I realise that the bloody towels had given me a bad case of fluff-dandruff that I spent the rest of the day picking out.
Of course in my saner moments I realise that the towels are just a small quirk of hospital life and the real reason for my misery is the fact that we could be stuck here for a very long time. And although it may seem that I'm facing up to it by sitting here putting it in writing, I still retain my right to denial. Today however my choice of escapism is a more towel-friendly optimism, despite the fact that most people think I am just deluding myself.
But there are positives. Firstly, they have stopped letting Dominic dehydrate. There is no point as we know we're not going home so we don't keep pushing his body to try and cope, he's now having ivs nightly and this should also help his mood (the day after ivs he's like a mini Buddha on red bull as his body is storing so much fluid waiting for the next drought and he literally bounces all over the bed he feels so much better). Secondly, he's pooing. Two days in a row he's managed to poo a decent amount. This suggests his bowels are waking up and doing their job. More poo means less pressure in his bowel which means less backflow into his stomach which means less gastric losses (still with me?!). Thirdly, his gastric losses do seem to have calmed down a touch. There was no green alien slime last night, and so far he's averaging less today than he was. Now admittedly his replacements have been turned down a bit (he's now having the bile returned to his bowel at 7mls an hour, down from 11mls, with his feed running at 33mls). Now that is a miniscule difference admittedly, but this is the child whose body decides that, in response to a mere 2mls an hour extra in, it will pump out an 300mls just to spite you. It poses the question of how and when we attempt to get him to the 44mls per hour of feed that he is normally on and how his body will respond when we next try and increase, but let's ignore that niggle for now, I'm sure there are some frustrations about the shared fridge that can work me through that issue.
So, projections for how long we'll be here, well no one knows, but at least something has changed, and it's changed positively. With all the doctors that usually have anything to do with us on holiday we are relying on the good grace of a lovely locum who has wasted a vast amount of her time trying to find a way to get us home since we first met 6 weeks ago. She's here pretty much 7 days a week (she gets paid hourly and is saving for a house so it's less dedication to the job and more money in the bank that motivates the work addiction). I get on very well with her, although I recognise that if I was a work colleague, or a friend, her confidence in herself and lack of confidence in everyone else might be jarring. She seems to genuinely care about trying to do the best by us though, even to the point of arguing with the ward manager during grand rounds. More importantly she gets stuff done, which can be a challenge when doctors and nurses have properly ill patients who take priority.
We did finally manage to get the EGG done (it's like an ECG that's done on the heart, but the electrodes go on the stomach instead to register the electrical activity). On Friday it was cancelled as his feed wasn't stopped and he'd had his motility drugs. On Monday the nurses managed to stop the feed but forgot to not give the drugs again, despite this the test was started and going well until the plug came out the back of the machine and all the data was wiped. Then on Wednesday the senior nurse came to start the second stage of the test, and managed to press the wrong button, once again clearing all the data. I used my hospital zombie state to remain calm and just did my level best to keep Dominic as still as humanly possible for another three hours. After all that fuss, it turns out the results were unremarkable and didn't tell the consultant anything she didn't already know about Dominic… incredibly useful feedback as you can see. So glad we went to so much trouble.
Another test we're aiming to do on Monday is to inject some dye into his bowel and see what it does. I'm not expecting anything unusual to show up (although the idea of seeing his bowel spell out rude messages with the dye is an amusing thought), as it's a glimpse into what goes on rather than an insight. It will be useful to rule out any parts having become dilated because of the rapid feed increases though.
The week ahead should continue to be a little more positive for everyone. While we're missing the second of our little holidays, I will get to spend more than a few tired minutes each evening with Roger (as he's promised to keep the time off work), and the kids should be slightly less on edge as they will be getting more than a few hours sleep a night trying to keep up with Roger's hectic work schedule as he ferries them backwards and forwards on his way to and from the office. Roger and I have vowed to make as good use as possible of my exclusive WC1 postcode and do tourist London with the kids so at least they will have something to talk about when all the other kids are chattering away about their exciting summer holidays at the start of term. We will have to fit it in around ward rounds, tests and ivs, but nothing is impossible.
I really need to spend positive time with everyone I think. It's too easy to accept the functional roles that our lives have become whilst we're in hospital without reminding ourselves of why we make such an effort to spend time together in the first place. Ultimately recognising where our real frustrations lie should help us to not lose sight of the bigger picture, that we are extraordinarily lucky to have people that are important enough in our lives to mean that we miss them when you can't see them as often as you want to, and that this won't be forever, even if sometimes it feels like it already is.