We have a plan (I have an overwhelming urge to say Batman after that, but have resisted the temptation in order to maintain at least a visage of sanity at this juncture of our incarceration). To catch you up since our last entry we have excelled at defining the 'quo' in status. We have tried doing nothing, changing nothing, just giving the boy tiiiiiiimmmmme. In response to this reasonable approach, the unreasonable gastric losses decided to creep a little higher. So, as next strategic move to counter this rather unexpected turn of events, we decided to try going down on his replacements, so the total volume of what he was receiving into his jejunum was reduced. His gastric output thought best of subtlety and went up convincingly this time, just to make sure we understood that reason did not come into the equation at all when trying to figure out what was going on. It seems that his intestines are so single minded about setting up residence in GOSH that the ward manager has gone as far as puting our names down for the annual Christmas party.
However, you will be no doubt pleased to hear that the one advantage of being slightly insane is that generally you whistle your own tune despite the overwhelming noise of everyone else's version, and I think my insanity continues to serve me very well, despite everyone else's pessimism, in remaining hopeful that we will be home sometime in the near(ish) future, and also to keep looking for signs that things are improving. This week, for example, saw the much awaited return of Dominic's consultant surgeon and surgical registrar who have both been on holiday for two weeks. The consultant really does look like he's been soaking up the rays in a dapper suit somewhere, whilst his registrar, so he informs me, has been soaking up the alcohol with the nurses for the last fortnight. I'm not entirely sure how we got onto that conversation, but it gave me a bizarre glimpse into the staff's lives outside the ward. I guess in some way they cease to exist for me when they leave to go home and it was slightly uncomfortable to be reminded that they then escape to a normal life while I currently exist in a continuous 12 hour shift pattern, without getting paid for any of it. Anyway, I digress, there was a certain amount of apprehension on my part about Dominic's consultant returning as his parting words had been that he would see me in a couple of months in clinic. Obviously in a surgeon's world once they have done a spectacular job of cutting and slicing any hint that their patient won't go skipping out of the ward, completely cured, singing their praises is unpalatable. If a patient then stubbornly refuses to get better the surgeon justifies it by blaming every other condition for masking how well the surgery went. Then, if the patient still refuses to get better, they are normally booted, unceremoniously, to the local hospital, unless the surgeon's decide that only they can fix the wonky body that refuses to work by doing some more cutting and fixing. I, personally, was apprehensive about the 'pack your bags the ambulance to transfer you will be here in half an hour' speech. Not that I have much against his local, but it would make life extremely difficult and it would slow everything down as they waited to hear from GOSH for every little change in plan. As it turns out, his surprise in still finding us taking up a bed space resulted in the other pre programmed response, and further surgery (an ileostomy) was proposed as probably being necessary. An ileostomy for those who don't have to immerse themselves in bowel related terminology, or who can't be bothered to google, is basically creating another hole in his abdomen to bring the end of the small bowel to the surface so the large bowel is completely avoided.
I think I gave my eyebrows a good 15 seconds to return from the ceiling before I reminded him that all of Dominic's bowel was working perfectly (admittedly in its own wonky way) before the surgery, and wasn't a little premature to be writing a rather large portion of it off a mere 6 weeks after it's been sliced and diced. Also, and more importantly, we had seen signs of everything powering back up and kicking into action last week with a run of days where he was actually pooing, and the only reason it was all over the place now was because of a rather enthusiastic contrast study (which incidentally had initiated the surgical response by showing rather scarily dilated large bowel).
This is where being an optimist helps. I'm lucky enough that the registrar and SHO are patient enough with me to happily show me the xray reports that they receive, so I asked to see the xray taken the day after they squirted 150mls of contrast into his jejunum. The dilation was quite impressive (think three or four Zeppelins flying over a motorway junction) and I had to concur that I could see why the consultant was thinking of bypassing that area altogether. But, me being me, I asked to see some previous abdominal films. Thankfully we had access to lots, and low and behold there before us was film after film of undilated large bowel. It seemed that the dilation was caused by the surgery, not of course directly, as I agree that part all went very well, but indirectly as it took so long for his bowel to wake up, in which time the feed they were pumping in was just sitting there. The gastric part of the contrast study (which had to be abandoned twice due to the contrast from the jejunal study still blocking the view) was interesting in as far as seeing that his stomach can empty (when an enormous amount of liquid is pushed through), but what I was really interested in was obtaining an xray the following day. I pushed for one, especially based on the fact that the contrast hadn't shown any signs of leaving his body 24 hours later. I finally got to have a look at it today, which was unfortunately after I'd already spoken to the consultant and low and behold, the SHO and I agreed, before us was a picture of a normal looking large bowel.
You see where optimism pays off with children like Dominic is by enabling you to see the bigger picture. The pessimistic approach sees the 'probable' outcome for a child with dysmotility, which inevitably involves a projected deterioration of a chronic, incurable problem. The optimist looks at an aerial view though, looking over the whole linear journey for positive trends, an overview, if you like, of what the child's body is actually doing over time. This approach sticks two fingers up at statistics and averages and requires looking at the child and everything that is happening rather than simply what is going wrong. Don't get me wrong, I'm not skipping along with my fingers in my ears seeing fluffy bunny rabbits and pirouetting flowers where there are none. I'm utterly realistic that the amount of gastric losses that Dominic has are not a good thing, however, I'm not so focused on that aspect that I can't also see that he is pooing well, he is having hardly any bile loss, his tummy is nice and flat and he is very well in himself. His body is, to all intents and purposes, working. My view of where we are right now with Dominic is therefore, mainly an optimistic one. In my view, it seems that the effect of the operation on his gut motility caused a knock on dilation of his large bowel. This was aggrivated by the contrast study (which caused him to have a hugely bloated abdomen and horrible retching for days afterwards which was when the dilated colon was seen by the xray).Five weeks after the operation his bowel 'wakes up' and starts working again, the recovery is hampered by the contrast study (and the effect caught on xray). However the recovery has started and when another week goes by the dilation is far less evident. His little body is stubborn and rather like a grumpy old man. It does not like to be hurried, aggrivated or nagged. it will do things in its own time no matter how hard you stamp your feet (here the pessimists thinking stops)…. but it will do them (is where my thinking stops).
So, how does this all lead us to finally having (some kind) of plan? Well a very nice (so I'm told), newly employed gastro consultant agreed to a multi disciplinary meeting with the surgical team. Upon hearing that his gut is moving things through (all being it in its own unique way) and his stomach is emptying, she agreed with my opinion that it is time to start clamping his gastrostomy tube to get his stomach to work a bit more and get used to dealing with normal secretions. She also suggested tackling the nutritional issues by getting rid of the second pump recycling bilious aspirates and try getting him to full feeds instead (again something I had been pushing for). As he was having upwards of 500 to 600 mls of losses daily they should continue to be fully replaced every evening by iv and if clamping didn't get the aspirates down by Monday she would liaise with two other consultants (including a motility specialist) and then testing would start on his large bowel (colonoscopy, endoscopy to check fundo, full thickness bowel biopsy and mannometry). Only then, she said, could the surgeons talk about the usefulness of an ileostomy.
It's probably the first meeting that I've had reported back to me that hasn't left me furious that people could have got it so wrong. It was quite an unusual feeling to be confident that a plan was in place that both made sense and that I had been advocating.
As for actually implementing it, well we've had a few miserable days where I have seen full blown tantrums, retching, lots of tears, leaking gastrostomies and very a very poorly boy. The result of putting him through it? Probably about 150mls less in 24 hours. Not that I don't have faith that it will work, but more that I think his stomach has other ideas about being forced to deal with anything right now as it's just to used to the easy life.
We will get there though, it might just be baby steps for a while. In the meantime the start of school has rushed up on me. Having made such a big deal about Dominic starting with his fellow nursery classmates, I've been trying to sort out a way to get him to school. The only way to do it, and still be here for his nightly ivs, is to leave the hospital very early in the morning. Sleep is a precious commodity that is absolutely missing now he has the ivs every night. The pump alarms every time he moves, which can be every 5 minutes, and combined with the feed pump running out of milk it makes for and exhausting and frustrating night. Then having to be out the door having sorted feeds, medicines, equipment and all my things before 6.30am is going to take quite a lot of caffeine to do.
He deserves a chance to start like everyone else though and the distraction will do him good, especially as he can't even leave his room in the hospital. It will also be really good for Elliot and Lilia to have someone in touch with their teachers and to get a kiss from their Mummy in the morning (if I can get them to let go of my leg). It's going to be haphazard and probably exhausting and stressful as I won't know if I'm going until that morning, but I hope positive for everyone.
So there you go, either you can see this as an entry that tells you that we're not getting anywhere with the gastric losses and now more testing and surgery is on the cards, or that Dominic's body is giving us clues that things are going in the right direction, and now it's just a case of gently giving it a helping hand. I think the latter is not only what lets me sleep, in between resetting the pumps, at night but also what allows me to stand back from the situation and judge where we actually are in terms of his recovery. Yes, he may not have made as much progress as we might have hoped, but that shouldn't blind us from seeing the progress that has been made, and that every positive step is just that, positive, and ultimately that one further footfall towards home.
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