Firstly let me grovellingly, profusely, prostratedly apologise for my unforgivable absence during the past two weeks. This is of course aimed at the few people left in the world who don’t conduct the majority of their human contact through Facebook, and who, no doubt, have been draping themselves on furniture in a dramatic way, knuckle in mouth, forehead wrinkled, racked with worry about the silence following my last outpouring, but of course far too polite to bother me personally for news. I promise that my absence hasn’t been a flair for the melodramatic on my part nor have I left a pause in cyberspace for any other reason than simply (and no doubt in disappointingly ordinary fashion), because right after Dominic’s operation I got ill. Then I lost internet connection. Then the whole surgical ward moved to a different one (that just happens to be a third of the size and showerless) so the other ward can be renovated. Then I got ill again. But here I am once more, fully restored to my former glory, tonsils at a rather more sensible size and able to stay vertical, so I can finally share the news that Dominic is fine.
Of course I’ve never been one to be less than generous with my word count so obviously, after you have wiped the tears of relief from your eyes, I will quickly recount the undramatic unfurling of the past two weeks. The operation went very well… well it went as swimmingly as the slicing and dicing of your youngest child can ever go. After a bit of a last minute panic about blood counts and clotting times (doctors are a touch prone to the odd flairs of the dramatic too it seems) the operation went ahead without issue. He had a laproscopy and laparotomy, they then removed 15cm of bowel and redid his jejunal tube access. The jejunum was then sewn to the abdominal wall and some adhesions were removed. It took about four hours which is quite remarkably quick actually. I guess it’s not a case of ‘too many cooks’ but more ‘many hands’ when it comes to having two consultant surgeons’ hands meddling with your insides.
From what has been relayed to me since, as I understand it, (and the operating notes confirm… the beauty of having a good camera phones to hand means you can reread at your leisure later on) as they first went in with the camera the bowel was obviously rotated again by the jejunum. It wasn’t rotated enough to be absolutely concrete evidence of the source of the pain, as it hadn’t affected the blood supply to the bowel, but it certainly seemed significant. Hopefully the long list of things they did to him has rectified this, if this is in fact the source of pain in the first place of course. It does fit, the milder episodes of pain being linked to the twist that they saw on the table, and the less frequent, but far more terrifying, screaming in agony, grey and very unwell little boy episodes being more suggestive of it twisting more and cutting off the blood supply to that part of the bowel. Time will, no doubt, tell.
I have to say, as major as the procedure was at the end of the day, Dominic has shown little evidence of it. He was very swollen after the surgery, but after his kidneys kicked backed into action and he pee’d out the 400mls extra they gave him in theatre he was on top form. He was even trying to sit up as he was being recovered. After a settled night on a morphine pump he was sat up and happy the next day, just needing pushes of morphine now and again. He was obviously sore if touched but was cracking jokes and leg waggling merrily in between films and DS games. He did say that his ‘tubey’ hurt a few times which made my blood run cold as it’s exactly what he used to say. I chose the head in the sand approach to it though and just took a deep breath and got on with looking after him. After all he’d just had major surgery in the exact same area, some pain was to be expected, surely?
The morphine was turned off on the third day and he was moving around and coping well on just paracetamol. It’s quite remarkable really if you think about what happened to his insides and you see the size of his scar, but that is just Dominic… remarkable. His energy levels have been very good, thanks largely to the artificial feed he’s having through his central line (parental nutrition). In the days that have followed, even with the slow and difficult reintroduction of the feeds Dominic has looked so well that people can’t stop remarking on it. He’s just so happy, and has some colour in his cheeks, it’s almost like he’s been given a new lease of life. As his wounds recovered I started asking him to be more specific about any pain he was feeling, and after a week he told me that he thought Mr Toppi (what he calls his surgeon) has fixed his tummy as it doesn’t hurt anymore. Here we are two weeks after the operation and he never complains of pain unless it’s the skin around his gastrostomy which is very sore as it leaks so much. It’s too early to celebrate yet, but I have to admit to be slowly relaxing, and letting out that breath that I’ve been holding slowly.
Of course home is a long way off still. His feed is only at 13mls an hour and is set to go up 1ml a day until we hit 44mls an hour. Every day losses pour out of his gastrostomy and they have to either reduce or be controlled for us to go home for good. Whether it is in 8 weeks or 10 weeks who knows and to be honest makes little difference when you’ve been in as long as we have now. In the short term we are simply focusing on Christmas and the team are coming up with a plan to get him home for a night and a day. The lovely, lovely SHO has offered to drive to the house to treat him if necessary, such is the significance of being with your family at Christmas to everyone. I have to admit to having a slightly different take on it. I think the value of spending quality time with the people I love can be found at any time, and whilst Christmas is traditionally that time, I don’t think I pin enough value on it to let it overshadow the value and importance of just being with my family in our home, no matter what the date on the calendar. Of course it is very difficult to feel in the slightest bit connected with the cosiness of home at Christmas when you’re sat on a plastic chair under strip lighting, but I do know, and value, how important it is to Elliot, Lilia and Roger that I am there so I will of course do what I have to in order to keep as many people happy as possible. I suspect it will involve a lot of to-ing and fro-ing from the hospital though.
So there is my very undramatic update. Dominic is doing well, and not doing anything unexpected… at the moment (not being pessimistic, but watch this space). Elliot and Lilia are surviving. Roger is surviving. I’m living in my bubble existence feeling rather removed from everyone, but rather closer than I’d like to my fellow detainees who I share a toilet with during the day and who then disappear to other parts of the hospital or home when the evening draws in. I think I’m the only one that stays now the rooms are so tiny, or at least the only one who shows any sign of life over night. So even though our surroundings have changed our journey towards home continues in much the same fashion it did before, let’s hope uneventfully from now on though. The pumps still beep at all times of the day and night, but we’re now down to 4 machines that he’s dependant on from the 8 that he started with, the pain is noticeably absent and his body seems to have fallen into the routine of being predictably abnormal. All in all everyone is just about keeping their heads above the water, except perhaps Dominic who seems to skate on the surface continuing to amaze us all.
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