One of the main reasons I haven't blogged in the last year, is that, at the end of September last year, Rowan underwent a procedure at Great Ormond Street Hospital, and there was a clinical error. A clinical incident. Whatever you want to call it. Lots of people have asked me exactly what happened, and it's taken until now to talk about it, from my perspective.
Now, I know this test is run quite a lot on complex gastro patients, and what happened to Rowan has NEVER happened before, so I don't want to scare the crap out of anyone who is then told their child requires this test. A year on, they believe part of Rowan's undiagnosed genetic condition is part of the cause for what happened, but, at the same time, it was not all of it, and I didn't know about it until a few months ago, neither did the doctors. I do not change my opinion of Great Ormond Street Hospital either. It's a fantastic hospital that have saved the lives of 3 of my children. If it wasn't for them, I wouldn't have the 3 amazing young boys I have today! We are all humans. Accidents happen. Mistakes happen. It's a fact of life. This accident has had a huge impact on Rowan, and still does. But it was still an accident.
September 2013 Rowan and I checked into hospital for a 2 night, 3 day stay. He would miss a few days of school, and be back ready to go on the Monday. The plan was to go to Interventional Radiology and insert a probe down his nose, through his stomach and just out the other side. This would then be hooked up to a big computer for several hours, and it would record what the muscles and signals in his gut were doing. Or that is what I understood. This test is fairly routine amongst complex gastro patients like Rowan. It's called an Antroduodenal Manometry (ADM). They tried in the May before to put the probe in, and it wouldn't go. So they needed to try again to try and understand exactly what Rowan's gut is doing. This was the reason for the admission. We had had a few tests to try and work out why the probe wouldn't go in the first time, and everything came back 'normal' so they decide it was just bad luck and they would try again.
On the Thursday, Rowan went down to IR (Interventional Radiology). I don't count Rowan's anaesthetics, it's not a statistic I necessarily want to be that aware of, but let's just say in his 5 years, it's a lot. So he went for his special sleep watching Peppa Pig on the anaesthetists iphone. It's never easy to let them go when they sleep, and it never gets easier, but we all have our own little coping mechanisms. I always have the same little routine. I go back to the ward and grab a shower (no matter what time of day it is!). I then treat myself to a 'posh' coffee (as in not hospital coffee) and toast. I eat them, in my own time, while reading a book or something. I'll update my facebook status, check my emails, play those crappy facebook games on my phone. Those kinds of things. After 3 hours, I knew they hadn't got the probe in. The nurse let us know it was time to go and get him, and I went down with one of the ward nurses and she told me we'd be going back to our ward. I knew the probe wasn't in for definite at this point, as if the probe is in you go to a different ward for the day. So off we went to IR, to collect him.
He was a bit quiet, and usually the first thing he asks me is what's for lunch/dinner/snack etc. While he's still half asleep. He didn't ask at all. I just assumed he was a bit older now and he'd started to understand you have to wait a bit. But he didn't ask. For several hours, he just laid in his bed and watched TV. Usually after 15-20 minutes of coming round from an anaesthetic the nurses are chasing Rowan around the ward to do his observations (temperature, heart rate, blood pressure etc). I started to worry a little bit, he hadn't eaten or drunk or even asked! The nurse and I agreed maybe they had been a bit over zealous and he was sore, so we gave him ibuprofen. Well......I gave him that, with a flush (water to clear the medicine out of his tube and into him) and he screamed. Very strange. But he calmed down quick enough so we just assumed he was very sore.
He spent the next few hours just napping, by this time he had asked me to get into the bed with him, and have a cuddle (again, this is unusual he HATES me in his bed!). But I went with it, still thinking he was just feeling a bit sore and a bit sorry for himself. At about 530pm (so 5 1/2 hours after coming back from IR) I asked to see the consultant. The registrar had been in a few times and I just wasn't happy with the response I was getting from him. He talked to me about trying again with the probe endoscopically the following day and I informed him that I would not be signing the consent as Rowan was clearly not right at the moment. At no point did he take me seriously that there was something not quite right with Rowan. However, the nurses, who know Rowan extremely well, were not prepared to accept the blase response.
So, in the consultant came. I explained that he was not right, and I didn't understand why. So the consultant suggested that maybe he was just exhausted as he had only had half of his calories that day as he hadn't eaten, or has his milk feed or anything. That made logical sense to me, so just before 6pm, the nurses and i got him some marmite on rice cakes, and cereal, and jelly, just what he had asked for (after coaxing). He sat up to eat.......I have NEVER heard my child make such an ear piercing noise. It is a sound that haunts me to this day. The nurses and the doctor on the ward RAN into the cubicle. They told me not to feed him, slowly lay him down and make sure he laid down. I had no idea what was going on. He would not stop screaming.
The next 6 hours was a bit of a blur. He constantly screamed until he was so exhausted he was sleeping in 5-10 minute bursts. Doctors came in to review him, but kept scratching their heads. They ordered an x-ray. At this point I didn't know what for, all I could concentrate on was trying to console and inconsolable 4 year old. Nothing I did helped him. The nurses were able to give him IV paracetamol but it just didn't touch the pain. He kept screaming that his tummy hurts. He was begging me to help him. The x-ray came (after arguing that he could not go to the x-ray department. He had the x-ray, but it was then decided he needed to be sat up for an x-ray. Bearing in mind we were told not to sit him up, so I refused, as the doctor was very adamant. So instead, they asked me to lay him on his side for 15 minutes, and then they would come back and re-x-ray him. He didn't want to lay on his side. I pinned him (literally) on his side for 15 minutes. Counting down each minute at a time. The nurses were absolutely fantastic. Constantly checking I was ok, trying to get him some more pain relief, trying to get hold of doctors. There was no response. It was just the nurses and I, and we were both completely powerless, with a child that was clearly in some intense pain. To give you an idea, Rowan has an incredibly high pain threshold. When he had laproscopic surgery, he had NO background morphine, and only had 4 pushes of morphine the entire time and was sitting up unaided within 48 hours of surgery. The pain team said he must have a high tolerance. So, at this time, the way he was behaving, I knew it was the worst pain he'd ever experienced.
I had gone into some kind of 'survival' mode. If I'd really thought about what I was doing, pinning my son on his side, while he screamed in agony, I would have fallen apart, instead, all I could focus on was finding what the hell was going on, so we knew how to help him. To do that, we needed the x-ray. Finally that time came, and the x-ray was done. The radiographer told me it would take about an hour to get the report. So I went back to cuddling him, and trying to calm him down, unsuccessfully. The verbal report was in, it looked ok. More confusion, still a child in pain with no idea why.
The hours past, the pain team came and went, there was a lot of confusion over what was allowed and what wasn't, and who said what to whom. Consultants came, night doctors came, surgeons, registrars, fellows, everyone. In and out, lots of scratching of heads. Then it was time for shift change, all the doctors changed over, all the nurses changed over. The two nurses that were on that night, were not taking any of it. They rang, and rang, and rang, and rang. All of a sudden, just before midnight, there was a surge of people in and out of the cubicle. By this time Rowan was sleeping in 5 minute intervals. Literally. He was hooked up to all kinds of monitors, that constantly bonged, his blood pressure was sky high, his heart rate through the roof, his sats dipped, then were ok, dipped, then were ok. The nurses put him on oxygen to try and help lower his heart rate and stabilise his blood oxygen levels (sats). There were surgeons, and doctors from the pain team, and a whole new load of people that I just couldn't tell you who they were.
Then.....there seemed to be a lull. A surgeon came in, he kicked everyone else out, it was that surreal calm before the storm again. He said 'Hi Mum, I'm just going to have a quick look......' he put two fingers just below Rowan's ribs on his right hand side, he pressed it, very gently, twice. He looked at me and said 'he needs to go to theatre......now'. I looked at him and I think I must have had the 'deer in the headlights' look. He quickly, but very directly told me he needed me to sign consent for pretty much everything, he didn't know what he was going to find but I had to agree to let him go in, find what the problem was and do whatever it took to fix it. I just nodded like a nodding dog.....his registrar came in with the form I signed it. I put my trust in them completely. Rowan was in theatre by about 0010. It all happened so quickly. It's the first time I have felt so completely nervous lifting him off of his bed, onto the trolley, and watching while they put him to sleep. I was so thankful he was going to get some rest, if nothing else. A break from screaming, a break from the pain, even if it took a general anaesthetic to give him that. But, as I wandered down the dark, all shut down corridor of the new theatres, on my own while I waited for the nurse to hand everything over, panic set in, and for the first time I started to cry, just a little bit.
Now, I never believed in all the 'supernatural', people 'looking out for you', all that kind of thing. Never. But, as I stood in that corridor, I heard a voice. Someone I knew, a friend of mine and Rowan's, who we'd spent many months in hospital with when Rowan was younger, who brightened our day every day those days, who shared in his first birthday with us, in hospital, had passed away earlier that year. She was 18. I heard her, and she told me 'it will be ok, he will be ok, I am looking after him'. I got goosebumps. I just stood there for a few minutes, the corridor was completely empty and I knew exactly who it was. I suddenly stopped crying, and felt a weight lifted off my chest. I whispered 'thanks Charlie'. I just knew then that he was going to be ok.
The nurse came out from handing over, and we headed back to the ward. She made me coffee and toast (I hadn't eaten for over 12 hours, or drank anything). I pulled out my bed to lay on. I started to read a book but I just couldn't concentrate. I ended up falling asleep for an hour or so. I then woke up to cold coffee and cold toast. I just couldn't stomach it. At about 4am the nurse came to get me to say he was done. Off we went to collect Rowan. I was anxious, I didn't know what they'd found, I didn't know what they'd done,I didn't know if they'd been able to fix whatever it was, but I just wanted to hug my baby tight.
As we arrived in theatre, I was more than a little bit shocked. You see, in the middle of the night there is no 'recovery' team, so the surgeons and doctors and everyone literally do their job, and ring the nurse. He was not ready to be collected, and he was certainly not ready for me to see him. But I did. He was blue, and he was on the bed shaking, he looked like he was having a seizure. I felt sick. I couldn't take my eyes off him. The nurse started asking questions and there were no real answers, the surgeon came over and started to tell me what he had found and what he'd done. All of a sudden I went dizzy, I asked if I could sit down, but before I had finished my sentence I had passed out. I came round, on the floor, with a load of monitoring equipment on me, my blood pressure had plummeted, my blood sugar was way too low. They gave me a chocolate bar, and put blankets on me and just waited. I was fine. I hadn't eaten, or drunk, and I think seeing Rowan like that just topped it for me. The doctors put me on a trolley and wheeled me back to Rowan's room, with the instruction to EAT AND DRINK NOW. So the other nurse on the ward went and found me whatever she could to eat and drink. About 20 minutes later Rowan and I were reunited in his cubicle.
Rowan was hooked up to double dose ketamine, and morphine on a nurse controlled pump, he had background running, and could have pushes (boluses) as well. He was on IV fluids only, with antibiotics and all sorts of IV medications. They had managed to look through keyhole surgery. He had a new gastrostomy (tube into his tummy) in, only it wasn't technically a gastrostomy tube, but it was all they could find in theatre. I was told he would not be able to be fed either oral food, or milk feed into his jej (the tube in his small bowel) for 10 days. They explained that they had found his stomach had been disconnected from his abdomen wall. This meant that his gastrostomy wasn't actually in his stomach, but in the peritoneal space. (the no mans land between all your organs). So when we gave him ibuprofen earlier in the day it had gone in this space, and caused a really bad case of peritonitis that would need complete rest. They had also stitched his stomach back to his abdomen wall. I was told that he had been a very lucky boy, and how he was not currently in intensive care, they had no idea. But I knew. I got another wave of goosebumps, and I knew it was Charlie. She had looked after him.
The picture from the surgeon, his gastromstomy button (the very circular thing at the top)
and then his stomach, the pale pink thing underneath. The gastrostomy
is meant to be INSIDE this. (ignore the scalpel!)
I finally fell asleep about 6am. I was woken at 830am by the ward sister and the head of nursing, who wanted to go through my version of events. At this point I hadn't really processed anything. But for them, the investigation had begun into finding out what had happened. It turns out that there had been a lot of clinical errors in that 24 hours I found out much later when the report came in. But it was all dealt with, and will be dealt with.
For Rowan though, it turned a 3 night stay into a 32 night stay, as we had problem after problem. His heart rate was consistently too low, so that needed checking out. He developed an allergic reaction to some of the antibiotics they had put him on to combat the peritonitis. He kept spiking a temperature. He developed 'collections' of fluids in his stomach, that took a very long time to resolve, and very nearly required draining. He had a reaction to the ketamine, so ended up on morphine only. He remained in pain for a very very long time. He lost a lot of weight. His appetite didn't return. They tried to feed him a few times after the 10 days was up, and it increased the pain to an unbearable point so they gave up.
Jo and Steve came to visit and really cheered me and Mummy up,
and despite some incredible pain, pulled funny faces with Jo :o)
After 32 days I took Rowan home. 24 hour a day TPN. No oral food except lollies. No enteral feed, believing he just needed a few more weeks gut rest, this would all be temporary. Extra pain relief including IV paracetamol, Buscopan, extra antihistamines, extra anti sickness medications. They left him on a small amount of TPN to maintain his blood sugars, and believing at some point he would get hungry enough to start eating again, and he'd start asking for food.
A year on, Rowan never has regained his appetite, not really. He has had a couple of admissions where they have tried to feed him again, into his tube, and after 4 hours of a teaspoon an hour of just dioralyte, they had to give up as he was in too much pain. He's had a few more tests to try and find out why, and they all come back normal. He lost 4 kg in a small space of time, so they have more than doubled his TPN. He still experiences tummy pains. Eating-wise we have progressed a teeny tiny bit. He still has his lollies and very small amounts of puree, which then drains out of his gastrostomy, into a drainage bag, so he doesn't really get any of it, and this causes more pain. We are struggling to keep his blood levels at an acceptable level. He has had a line infection. He is in the wheelchair more than he is out of it now. And he is still on TPN 24 hours a day. He can not be left with anyone but me, and a qualified TPN trained nurse, therefore I went to school with him every day for a term until a nurse was found. A close friend of mine was trained up to be able to also do Rowan's TPN, so I can leave him with them too. But it's very restricted, and we are together more than we have ever been before. Our life changed dramatically that day. But, it taught me that we really do not know what is around that corner, we went in for a routine test, and came out with our lives completely different. It is a deterioration in his quality of life, but, neither he nor I are going to let that stop us. We have just found new ways for him to do the things he wants, and deserves to do. He is living his life still, just in a slightly different way. We had our second ever holiday a few weeks ago, and it was fantastic, stay tuned for that blog post! For now, just remember, humans make mistakes, they are not malicious. Accidents happen. You don't know what is around the corner, so appreciate what you have, and live for the here and now.
Rowan bowling, in his wheelchair, soon after we came home Rowan meeting a Beefeater at the Tower of London, after the Believe in Magic Christmas Party.
Rowan's bag, that he now takes everywhere with him.