So as you all know the clinical error occurred (check out Clinical Error). Since then we have really been trying to adjust, dealing with a few line infections, and waiting for more tests so we could move forwards.
In January we went into GOSH for 3 weeks for various testing. Some were routine, and some were meant to be diagnostic. I won't go into the tests themselves, but the main one was a nuclear transit study, he was only the 3rd to have that one, It was pretty traumatic, he ended up on ketamine for pain relief, but we got the test done. This test involved a number of scans, every day for 5 days, watching a very special dye go through the system (it's not the same as other dye type tests although I don't know why). After a couple of days the dye wasn't moving, I didn't think anything of it to be honest, and carried on, by day 4 it still hadn't moved, so I asked the guy doing the scan, and he said it did seem to be stuck. Uh oh. We were meant to be going home for the weekend on the Friday, after the scan, however the scan revealed all the radioactive dye was still inside him. Stuck. We had to have a weekend of laxatives to get all the dye out, thankfully it worked (there was a little bit left but they let go) and we moved on to the next tests. I was really hopeful this would lead us to a diagnosis and a plan, it was an abnormality, something we probably would have seen in manometries if they had been successful!
|Just a picture of Rowan,|
because he's worth it!
I had a few chats with a few doctors before we came home, and it seemed like an ileostomy was going to be the way forwards. (an ileostomy is a stoma, that brings his ileum to the skin, and then a bag is attached on the outside, and basically his 'waste' goes into the bag, rather than him doing a number 2 on the toilet) I spoke with his consultants, I tried to get my head around it, I googled, I asked friends who had ileostomies, I spoke to nurses. I complied a list of questions, I asked about the process, the positives, the plan afterwards. It looked as though once the ileostomy was in and healed, we would go back to gosh to try feeding him again, and then increase the feeds and reduce the TPN and we could go back to pre-clinical error state. For the first time in a really long time, something inside me had hope. Hope that he would be able to go swimming, be off TPN during the day, be able to eat whatever he wants, whenever he wants, gain weight be strong again. I could see a little bit of the future, and if you'd asked me 3 years ago, if I was happy with the way things were with Rowan, I would have said no, but now, I would do anything to go back to that.
So, at the end of April, I drove down to GOSH for a meeting with the motility team and his usual TPN team. The purpose was to discuss the plan (aka ileostomy). I phoned the CNS the day before and clarified that's what we were there to talk about and she said yes, and that the problem they found in January, no one had said would 'fix itself' and therefore everyone was on the understanding this was the way forwards. I know it sounds silly, to phone the day before and ask about the content of the appointment, as surely that's what the appointment is for, but I don't manage things very well when unexpected things happen, no one does really, but I really really don't manage it well. So I drove down to GOSH, finding that part of me that I needed to be Rowan's advocate and ask questions, and have the confidence to air my opinions if they differed.
First off, the first thing we do is height and weight. He had lost weight, quite a lot of weight in fact. Bugger. So the appointment started off with his usual team, tweaking his calories, adjusting the rates and volumes, adding in more of the things his bloods said were lacking, had a look at his medications, nothing remarkable, just a typical nutritional appointment for us. Then it was time for the motility consultant to talk. He started explaining to me what they found in January, that the left side of his colon doesn't seem to work. (I already knew that). That's why we have so many issues with constipation (I knew this too). So then his usual consultant said 'so the plan will be an ileostomy' to which the motility consultant said 'no'.
No. No? No. No? No. Huh? The room was silent, the atmosphere could be cut with a knife. Blindsided, shit. His consultant turned to the motility consultant and just said 'why?' I could tell she was as shocked as I was, if not more so! He explained that the finding, while significant, was insignificant. While it's an issue, and previously would explain some of his issues (pre clinical error) it's currently not causing an issue as such. I think I must have had that 'what the heck' face on, and I just couldn't talk. So he tried explaining it to me 'if we get Rowan feeding, IF, then this will become a problem and he may then need an ileostomy, however, if we put an ileostomy in now, it won't make any difference to his current feeding situation, therefore it's unethical to put him through surgery, when there is no benefit'. I understood. But I was still confused. So basically, we needed to get him to feed. Why can't he feed? Why can't he eat? Why can't he have milk feeds into his jejunum (small bowel)? Why?
'The clinical error probably did something, to something, we just don't know what either of those somethings are'. Oh. Shock again. Ok so more tests right? More tests that we run to find out what those somethings are? No. They had a bit of a conversation amongst themselves, trying to work out the plan, if there had been any tests that they could do that we haven't already done, that weren't potentially too risky considering the clinical error, and the answer was no. Everything they have done shows the problems we have when he feeds (along with videos I have sent them), however they just don't know why, what, or how. Completely undiagnosed once again, a complete mystery.
The plan was NO PLAN. The plan was 'go home and have fun'. Accept that Rowan is on TPN long term, that at the moment we can't feed him, this is it for us for the foreseeable.
I kind of went into shock for a couple of days, literally. I couldn't talk about it, couldn't process, and certainly couldn't accept it. TPN was meant to be short term, temporary, we were nearly off of it, now we're 100% reliant on it. This was not what was supposed to happen! I went through a whole grieving process I think over the next few weeks. I had to accept a lot of things, that I hadn't been willing to accept before. Adjust to this being our life, and not just a phase. Then I had to start telling the professionals. This no longer had an 'end date' that I needed to get to, before everything would be 'normal' again, and they needed to be aware of that, and look at long term, rather than 'in the interim period'. This then meant a lot more meetings, a previous consideration of reducing Rowan's respite hours was thrown out the window (sharpishly) and he was re-awarded the same as he already had (phew). School plans have been considered, and we're trying to get him on a different timetable to access more of the curriculum, as he isn't coping for more than a couple of hours. Physio and OT and I had discussions around ways to help him be independent, while being dependent. My life was once again turned upside down.
But it's worth it, it may not be the life I wanted, it may not be the life he deserves, it may not be the life he would have had, or should have had, but it is his life. And no matter which cards he has been dealt, he will end up with a royal flush, and a big confident smile. His cards will mean he is a winner every time. I will make sure of it!