Whilst I appreciate the rich variety of people that I am privileged enough to encounter courtesy of the NHS, I really wish you could wing it so there are slightly more sane people in my vicinity, rather than the collection of prehistoric flubber that has currently taken to lurking outside my bedroom door swearing at their velour clad offspring.
You see I’ve been spoilt recently by having someone sane to talk to every single day. And not just sane, but sane and living a lifestyle like mine which makes her a rare gem indeed. I have to admit that, rather selfishly, I have enjoyed having someone to moan with (or perhaps at). Normally, when people are kind enough to ask, I stutter my way through some kind of general update about Dominic that vaguely fills in the gaps for them, as to be honest I’m not entirely sure what information is appropriate. I mean, at what point is talk of poo and bile pouring out of holes in the stomach crossing the boundaries of small talk etiquette? In this sense it is actually quite liberating when you’re standing in front of someone else’s child who has as many tubes and variations on the bile theme as your own child. The sense of affinity can be quite liberating and it just goes to show what a powerful tool the internet can be, as it is only in the world wide soup that I have had the opportunity to meet other mothers who get to live the same hybrid lives, with one foot in the normal domestic routine of kids, school runs, washing and such and the other in an exhausting hamster wheel of disability that is as relentless as it is rewarding. It just happens that Great Ormond Street is a rather convenient place to bump into them in the flesh as our children seem to gravitate towards the same doctors (perhaps that accounts for the slightly crazed look of some of them) and so inevitably we eventually get to meet. Finding out the lovely Nikki happened to be coming to the same ward with her son was a welcome respite from our frustratingly confined daily routine.
With Nikki’s arrival I found myself actually being compelled to talk about Dominic rather just wanting to scream out of the window at the first mention of how he is doing (although actually I couldn’t really scream out of the window unless I was willing to get into an extraordinarily undignified position as the hospital thinks it is necessary to put bolts in the window frames so they only open a few inches. I’m not sure if they think that the parents will eventually jump rather than spend another day on the ward, or pass the time by squirting water out of 60ml syringes at the unsuspecting workmen below, but I can barely breath an inchful of air from the real world, let alone smooshing my lips through the gap in order to scream).
Don’t get me wrong I love that people care enough to ask after Dominic, it’s just there are only so many ways that you can say ‘no change’ before having to fight the desire to go and find a nice corner to rock in. I was, in all my ungracious and desperately unBritish selfishness, rather miffed when my new friend and her son were subsequently discharged. Of course for all I know she could have been throwing herself at the perfectly polished Italian shoes of our sons’ surgical consultant begging to be allowed home if only to have a break from my constant intrusion. I try not to dwell on that possibility however and rather think that if she was throwing herself at any part of him, it would be far more likely to be a bad case of Stockholm Syndrome dressed up as a bronzed Italian in a natty, if slightly shiny, suit.
So now they have left to resume a normal existence at home I get to instead share my day to day life with a short man, with short man syndrome who seems to view me as some kind of exhibit for his amusement. While he stands outside my door, unapologetically gormless, he is also unwittingly sharing the bottom half of his belly which likes to play peekabo out of his long suffering, at least two sizes too small, polyester football shirt each and every time he takes a raspy breath. I also periodically get to see somewhere that my brother can park his bike next time he visits. His wife, who obviously shares Donald Trump’s hair stylist, keeps the dress code in the family by letting it all hang free, celebrating the muffin top look by wearing a football top which appears to be a good 3 inches too short. She and her husband are also generous enough to share their colourful language with Dominic and I. Without even having to break the open mouthed stare, they appear to spend a large amount of their day gently persuading their child (with a rich assortment of self esteem building vocabulary) to hurry herself up and get in her room before something heinous happens like her ferking chips geting cauwd. This is peppered with a almost constant need to telling the nursing staff to get a ferking move on as they’ve got more important things to do with their lives (apparently).
Goodness only knows how they view me. Think of the poor animals you see behind the glass at the zoo. That’s a bit how it feels as we sit in our room looking at the people walking to and from the playroom or the kitchen which are both right outside our door. Everyone takes a quick look in the other rooms as you walk past going down the corridor, it’s natural curiosity. Some people are quite shameless though and just stand there staring at us, as though they’re waiting for us to start performing tricks for their amusement. I’ve found if you sneer just a little bit, so they have to lean forwards to get a better look, as they can’t be entirely sure what they’re seeing, it makes slamming the door loudly in their faces both more satisfying and more effective as a future deterrent.
I like to see my place within the ward as not just being chief entertainment for the masses though; I have a practical role as well. I would like to point out, in lieu of the most unfriendly picture I‘ve just painted of myself, that I am perfectly amicable in most circumstances. I regularly help make sense of the industrial microwave for the confused parents looking at the smouldering chard lump that 30 seconds ago was a delicious looking Waitrose ready meal, I unquestioningly show them the trick to opening the fridge after someone has just shut it and of course make pleasantries if I’m caught nuking some food at the same time as someone else. I do actually smile, and I do attempt to make small talk in the same awkward way as everyone else when you’re both in an utterly abnormal situation. I just don’t go out of my way to get to know anyone on the ward anymore. I honestly can’t see the point when they’ll be gone in a few days. The art of conversation is a skill best practiced though and it’s too easy to get so used to staying in your room being unsociable that inevitably leads to the thought of doing anything else seeming like just too much like hard work. This was beautifully highlighted by a brief return home that I made to pick up the children from school as a surprise. I know that people spoke to me, I know that kind words were expressed, but I haven’t got a clue what any of them were or even if I managed to make eye contact. The art of conversation from my side was sadly very lacking. Of course sleep deprivation could have had a lot to do with it, things have been a bit wonky in the world of Dominic and that invariably has a knock on effect on both my ability to sleep and my willingness to allow my head to leave all thoughts of medical possibilities and stray into the real world long enough to actually string a coherent sentence together.
The last couple of weeks have seen a bizarre shift of events. In a deft move that only Dominic could pull off he has morphed from being the persistent gastro-problem child who is blocking a much needed surgical bed, to a gastro-problem with perhaps some nuances of surgical interest, to formerly gastro problems now probably surgical ones (again). The change has been exhausting, and utterly depressing.
Let me fast-forward through the last couple of weeks… The plan to clamp his gastrostomy commenced with much retching and uncomfortable grumpiness and barely touched his losses which were reaching and exceeding 600mls with a worrying ease. He continued to have bizarre poos and to look deathly pale with dark red rings and a waxy appearance. Then he had his MMR booster (remember the plan for him to start Nursery… ). He then woke up with a temperature the next day that was either the booster or an infection. Not wanting to risk an infection he was started on antibiotics. The next three days he was unwell and some bad stomach pains that he’d been having suddenly became quite severe, including one that involved me being stuck in Camden with a child that was screaming in agony who then passed out in a taxi from the pain. Then after surprising the children by picking them up from school and having a nice night with them and Roger we attempted to have a fun afternoon in London before we were dropped back at the hospital. Cue agonising stomach pains at the train station, a mad dash back to hospital and a week trying to figure out what the hell was going on. I should point out that while at home I discovered that one of the drugs that he had been started on contained milk, soy and gluten. If you keep in mind that this child is on the most broken down elemental formula’s possible because he seems to react to so many things, this wasn’t a good strategy to try and improve the workings of his insides. I stopped it straight away, and he’s looking much, much better ever since. So with that revelation, we also see the numbers start reducing on the losses and his poos become less worrisome (although admittedly they still look like pale gold metallic paint… apparently this is fat malabsorbtion according to someone whose job it is to test my son’s poo. See life could always be worse…). I’m not saying there is a direct link between removing the probiotic and things improving, but it certainly didn’t hurt. The pains continued however. It has been like watching my little boy in labour. Sweating and shaking and screaming, then a pause of 15 seconds before it happens again. The only clue of what is happening is that he is fine in-between the pain and when drugs were given at the end of an episode he hit the roof, like that part of his bowel was in agony. A little time later it was fine again. Ultrasound, xray and contrast are all inconclusive as it’s impossible to get him down there fast enough to do the test during the pain. We only have history, severity and guesswork to help which isn’t much of a comfort when the surgeons are talking about the possibility of operating again.
I’m enormously thankful that these events have happened in front of a whole host of people. What happens to mothers like me, who are lucky enough to have children who like to know what are gamsat scores ? And like to challenge the medical profession, is that, when they are stumped, at one point or other you can guarantee that someone will ask the question… is the mother doing it? This question was asked in a meeting of all six of Great Ormond Streets highly respected consultant surgeons, including one who had retired but always seemed to get the ‘challenging’ cases so agreed to come and lend some wisdom. The consultants listened to Dominic’s history, heard about the latest challenges and concluded one of three things. Either he had eaten something that had caused a partial blockage, his bowel was intermittently twisting, or it was intermittently telescoping in on itself (intussusception). The consultant had seen his bowel doing this during the operation, so that was at the top of everyone’s list. Of course when they couldn’t make up their minds the spotlight fell on me (in my absence I should add, I wasn’t invited to this meeting of great minds, being only the mother). I’m not cross about this, I’ve been expecting it. So thankfully there were a good few people who objected loudly to the question and claimed to have witness the bile and the pain and the question went away. But I’m left with a residual low level paranoia that makes me a little more edgy than before, and far more careful about how I phrase things and who tells the doctors details about what is going on.
So here are things as they currently stand. Dominic’s losses are bumbling between 200 and 300mls which is great and would possibly be manageable at home. He’s still malabsorbing fat which suggests that his insides are very irritated, possibly still from the probiotic that contained things that could well have inflamed it or from something that is currently happening. He is still getting the pains, sometimes often, sometimes with a longer break in between, sometimes short, sometimes seemingly never ending. He is in agony when they hit, morphine does not touch it, and the doctors only have a best guess to work on. So the question hanging in the air is do we leave him in this much pain for another week hoping an answer will show itself or that the pains will magically disappear, or do the surgeons operate, treat what they think it is and hope he doesn’t come round with a bowel that will take 6 weeks to start working properly again and the pains as well. It’s a tough one isn’t it? Ask me when he’s screaming and I’d say that I’d be willing to do anything to try and take the pain away for him, ask me when he’s happy and I’ll be more cautious and my mind will turn to my other two children in just as much pain in their own way. All I do know is that being in limbo doesn’t sit well with me and I find it hard to focus on anything outside our little hospital existence. So forgive me if, for the time being, I remain that person staring back from the other side of the glass, waiting until the surgeons roll the dice and let us know our fate.
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