Single Parenting and Hospital Admissions.

I realised a few days ago, that no one really understands the logistics of what happens with Katrina, Cameron and Ayden when Rowan needs to go to hospital, whether that's the local hospital, or GOSH. You would assume they'd go to family or friends, I mean that's what happens with most siblings isn't it? My situation is a little different however.

Due to circumstances I don't have family who are able to help out, either through work commitments or logistics, and actually the vast majority of family would not offer anyway, due to them just not being part of our lives. The 'other' side of the children's family either don't know my children, have never met them, or are not allowed contact with them, which has been decided by a court. This only leaves friends. I don't have many friends, in fact, when it comes to needing someone to help out with the kids the list is pretty much non existent.

So what happens with the kids? Depending on which hospital Rowan happens to be in, and what days of the week it is. If it's certain days of the week, I have one friend who helps out, whether it's sitting with Rowan, or looking after the other kids, or running to the shops, or whatever will be helpful. If it's the other days of the week, I am alone. It's hard. Very hard. 

If he is in the local hospital, my routine looks a little bit like this:

6am Get up get the kids ready for school, including putting dinner in the slow cooker, hoovering, dealing with the dogs, tidying up, putting a load of washing on, putting the dishwasher on.

815am Take the kids to school

830am Go to visit Rowan, trying to get there for 9am and wait for ward round

9am-3pm deal with doctors/nurses/Rowan, getting him up and dressed and washed, and fed, and entertained, medicines done, out for ward leave, IV to do, checking his temperature, cuddling him, comforting him, popping to the shop to top up supplies, dealing with blood tests and other tests, as well as a constant influx of calls, texts, and emails about everything, and yet nothing all at the same time!

3pm leave the hospital to go pick the kids up from school

430pm arrive back at the hospital after picking all the children up, nipping home to collect ipods/tablets/toys/dvds and anything else Rowan has requested.

430pm-6pm entertaining all the kids in a very small space, getting homework done with them, and reading, games, watching TV, more meds, more doctors and nurses to deal with, emptying drainage bags, getting Rowan's Pjs on, teeth brushed, sorting out what needs to go home, and what needs to stay, tidying up his cubicle.

6pm-730pm I.V.s and TPN connection to happen, getting Rowan into bed, and settled for the night, leave him crying because he wants to come home.

730pm head home with the older 3 kids, now grumpy and tired!!

8pm- Arrive home dish up dinner, to find I forgot to buy potatoes/chips/rice/cheese etc. Hunt in the cupboard to find something to substitute! While getting the kids to feed the dogs, tidy their rooms up, find their stuff for tomorrow.

830pm Kids eat dinner, put their Pjs on, and go to bed, then I eat (or not, which is more likely).

9pm Spend time playing with the dogs, topping up their water bowls, fold the washing out the tumble dryer, put the wet washing in the dryer, put dirty washing in the washing machine. Unload and then reload the dishwasher, clear up after dinner, sort out whatever Rowan sent home or requested for the next day. Catch up on emails and messages on the answerphone, write a few emails, open the post.

1030pm Call the hospital to see how Rowan is.

11pm Go to bed, but now I can't sleep.

12am, the hospital rings, Rowan's TPN pump won't stop beeping and I have to talk them through step by step how to shut it up and get it running again after they have done his I.V.s

1230am, try and sleep.

It's absolute chaos as you can see, trying to run a house and feed the kids, and keep them all at the things they need to be at. This is a normal day, on a Wednesday or a Thursday, it's even more complicated as it's Guides/Beavers/Cubs. But it needs to be done. The dogs don't get walked, I don't get to go for a run, I don't get to clean the bathroom/toilet/mop/dust, I don't get to go food shopping. It's lonely, and isolating, stressful and exhausting! The few times I have asked people to help me out, I have either been told no, or people are busy, that they find it hard to see Rowan poorly, or something else. I understand people have lives to lead, and sometimes I get really upset that no one will give me a hand. I may appear that I have it under control, but I am often falling apart. I often go all day without having eaten anything, because I just can't get away. When Rowan is really poorly I don't even get to the parents room to make a coffee as he just wants to be with me all the time. Sometimes I physically can't eat, the emotional drain of it all, and the worry of him being poorly, he never has to stay for something 'simple' as I can do so much of his care myself, so when he is in hospital, it's serious, and having to leave my 6 year old in hospital all on his own every single night, hurts in ways I can't explain. Would you leave your 6 year old alone in hospital overnight, I mean it's not like a sleepover is it? He's there because he is very poorly, and the time your child needs you is when they are poorly and I just can't be there with him, because of the circumstances. How would that make you feel? What would you do?

If Rowan is in GOSH the whole thing is completely different. Due to having no one around to help out, after several years of constant fighting and arguing and failed placements and complete nightmares, and me having to sort childcare out mid admission because whoever has the kids can't/won't have them any more, the social worker at GOSH said enough was enough and she intervened after I literally had a breakdown mid-admission with the stress of it all. My older children now go into foster care while I am at GOSH. I usually have to fight for it for each admission, and it has to go to panel, and there is a whole process to go through and usually requires a lot of input from other professionals to justify the hospital admission. I didn't want this for them, but I have no choice. Usually they get to meet the foster carers before they go into care, see where they will be staying, get to see who else lives in the house, any pets, choose their bed (for the boys), ask any questions they have, I can talk to the carers about the best way to manage the kids, and feed them etc. Then when they are in foster care they can ring/call/facetime (the brilliance of apple products and wifi!) me as much or as little as they want. The placement is stable, it's not going to fall through, and while it's usually a little more complicated than that, arranging time to see them, and spend time with them during the placement etc. I'm not going to find myself with nowhere for the children to sleep or stay. So for this particular admission we had weekend leave, so I picked all my kids up from school on Friday, Saturday we nipped to the shop, and did a bbq and did marshmallows and smores, and ice creams, the kids had a water fight, and watched a film (or went to bed early in Rowan's case) and had them until Sunday evening, when I returned them to their foster carers and return to GOSH ready for the second week.

When I say my kids are going into foster care, it's always assumed it's a bad thing, or a negative thing, or that something has happened, or that I have done something wrong. It's not like that, and I wish they would call it something else rather than foster care, respite care, or something. It's pretty rare to be in the situation I am in, and therefore lots of the protocols we have to go through are exactly the same as when they remove children from parents and that's hard to stomach sometimes. Then it's a case of making sure the forms are filled out in a way that reflects the situation, as they just don't work otherwise. For example, I usually I get letters a few weeks after I have got home again with dates and times for medicals, which is standard practice when a child is put into care, and I have to ring up and cancel them, because my kids are back at home, and they don't need medicals anyway. There needs to be more awareness and different processes to go through in this situation, however unusual or rare it is, it still happens!! It's hard enough having to leave your children with strangers, even though you know they have been through rigorous processes, without leaving them with a big 'LOOKED AFTER CHILDREN' form, that makes you feel inadequate as a parent.

So as I type, Katrina is with one foster carer, and the boys are with another, and I am at GOSH with Rowan. It works, in as much as the kids all get a break from each other, and they are in a stable environment continuing with their routine and going to school etc. It's hard for them emotionally to be split up, and not at home, and not with the dogs, nor in their own beds. I would love to say it gets easier each time, but it doesn't. This is one of those things that happens when there is a practically non-existent support network. We get through it, but it's not one of my favourite things that's for sure, and it usually ends up with me making myself ill! That and the kids are all over the place emotionally, one has meltdowns, one cries all the time, and the other gets super hyperactive!

I guess the point of this post was to give you all a little insight into how absolutely chaotic life can be with a child who needs frequent medical attention and hospital stays. Especially as a single parent. Especially with a minimal support network. My advice to you would be, if you know someone in a similar situation, don't assume they have it under control. Just because it happens regularly, does not mean it's easy, or organised. Offer to help, whether it's school runs, bringing dinner, bit of childcare, visiting the hospital, bringing lunch, magazines or coffee, offering to walk the dog, or have the kids for a sleepover. I can tell you now, someone in the situation I am in, would be more grateful than you can ever imagine. That person would also often be the first one to offer you help if you were in need of it. Friendship is a two way street, sometimes it's hard for people to ask for help, and there are only so many times they are willing to ask and be told no before they start believing no one cares. Don't just say you care, when there is a crisis and help is needed, show that you care.

The Plan is......No Plan

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!

How do we feel about being Undiagnosed?

Friday 24th April 2015 is Undiagnosed Children's Day.  A day where we (those of us with children without a diagnosis) try to spread as much cheer awareness as possible.  By celebrating our amazing children, writing blog posts around it, composing exposés about how life really is for us, the battles we truly face, the let downs from services, and revealing our feelings about how we live life with a catalogue of unknowns, all down to the fact we can not fill in the 'diagnosis' box, or tick a pre-assigned box on a form.

I could do the same, but I won't.  I have more than my fair share of negative stories to tell, the number of let downs, the number of battles and arguments with services to fight for what Rowan deserves.  The number of days I have spent terrified for his health, the amount of hospital visits and tests we have done, the number of inpatient stays, and blood tests.  The things Rowan regularly goes through are well documented.  I could write a thousands posts on just these, and some of the stories may shock you, and leave you horrified.  They may even upset you.

Instead, this post will be about the other side of life without a diagnosis.  Some of you may not understand what 'other' side I am talking about, so read on, after a cute picture of what my 'without a diagnosis' child looks like.

                                                   

                                                                A recent hospital stay, doing music
                                                             therapy with Thomas's fund as distraction.

So, this 'other side' of having a child without a diagnosis, from my perspective.  I don't know what the future holds for Rowan, and I can't speculate, no one can.  The doctors have no new ideas, and while we occasionally get a little bit of information that tells us something new, it doesn't explain the whole picture or lead us any closer to that elusive label.  Having spent a number of years looking for that label, over and over, desperate to grasp hold of something, to explain it, to negate my assumptions I did something wrong, I failed, I could have done something different, I missed the whole point of becoming a Mummy.

When Rowan was 18 months old, he was admitted to Great Ormond Street for his long stay.  I could tell you exactly what his weight had been for the last 12 weeks, and on which dates, I could tell you blood test results, I could tell you exact dates he had met certain milestones, and I could recite every single medical person's phone number, email address, postal address, and full name and job title, the last time I had seen them, how long the visit lasted, and exactly what was discussed.  I thought that that was my job.  The doctors looked to me for those answers, those details, I had to have them.  If I didn't have them, I wasn't doing my job properly.  I soon discovered I was very, very wrong.

Someone, not long after we had been admitted, asked me what Rowan liked to play with.  He was a very poorly little boy, and it suddenly dawned on me, that I had absolutely no idea who this little person in front of me really was.  Don't get me wrong, I loved him with everything I had, I just had no idea what he liked to play with, what his favourite colour was, what he liked to watch on TV, what kind of music he liked, he was 18 months old, the age they really, really start to build into a little person, and I'd been missing it.  My little boy could be gone, and I never would have gotten to know him.  That day, my life, our lives, and mine, Rowan's, and all the other children's relationships changed, for the better I believe.

I stopped asking what blood results were, I stopped examining, weighing and measuring bodily fluids, and getting worked up about his weight, or lack of.  We were in a hospital, the nurses and doctors were there to deal with all that.  I took this opportunity to become his Mummy, and his friend, finally.  I went into the hospital toy room, and had absolutely no idea what to choose for him to play with, he had hundreds of toys at home, which ones did he actually play with?  I didn't know.  It took me a few days, but I worked it out, he likes the little tykes car, anything that played music and flashed, the noisier the better, he hated messy play, or getting dirty, I was started to learn who he was, and he was a cheeky monkey!! We started to learn makaton together, and we were finally communicating, together.  

I came home from that hospital stay with a whole lot of medical care to do, high risk medical care, that is extremely time consuming.  But, all I wanted to do was go home, and repaint Rowan's room, mickey mouse, because that was his favourite.  Red was his favourite colour, and he had an eclectic taste in music.  I wanted to get him home and introduce him properly to his siblings, and let him be himself.  That hospital stay was the most enlightening stay for me, it changed everything.  It changed my perspective of everything.  

This has been my second chance and this time I am doing it differently.  It's not easy for doctors to hear a parent tell them no when they want to run a particular test, and mean it, especially when they are so used to you always agreeing with them.  I made choices for Rowan, not just for the reason of finding a diagnosis.  I made balanced decisions, if a test was not going to change the treatment plan we were already actioning, whatever the outcome, I would now say no. It made me a better parent, a better advocate, a more confident person.

So this other side of not having a diagnosis, has taught me the value of the other things in life.  It's taught me the only thing that matters in life, is the quality of it, not the quantity.  I don't know what's around that corner, with, or without a diagnosis, no one knows, but without a diagnosis you really have to learn quickly to appreciate the fragility of life.  I tell people we can't tick a box, that means that we're filling the rest of the page, and we're really going to fill it.  Quality of life decisions can be hard to make, but I take one day at a time, one step at a time.  Rowan has a life, and he's going to live it.  He is going to experience as much as physically, humanly possible, whether he likes it or not.  And that's what we do.

So, recently Rowan has started horse riding, started, and become invested in Beavers.  He's had music therapy, we've been camping, we've been to a theme park, we've been to a festival, we've been to the beach, we've walked countless country parks, gone on easter egg hunts, been to the cinema, chalked on the patio, had a bbq, made cakes and biscuits, been to meet Paul Hollywood and Mary Berry, we've been geocaching, we've been to a farm, and a safari park, we've been swimming......and this list is still growing.

I just have to double check with myself sometimes, that I haven't spent so long fight battles, that eventually I often win, but not always, that I have sacrificed Rowan's quality of life in the meantime. It's a real juggling and balancing act, it really is like a circus in my house. There is a very fine line, and everyone's line is in a different place, but the medical side of Rowan, is not Rowan.  It's just a small part of him.  And even if we got a diagnosis tomorrow, it would not change who he is, who he has become, and who he will be.  He is the same, very very nearly 6 year old, with, or without a diagnosis.

Being undiagnosed can be isolating, terrifying, lonely and leave you feeling helpless and hopeless.  You're expected to fight battles that you just don't have the time and energy for.  You have to fight for absolutely everything your child deserves, equipment, respite, schooling, care, therapies, appointments, medications, you name it, without a box to tick, you have to fight for it even harder.

 We now have a place to go to vent all these issues, get support, and see how other people have done things.  Yes, every now and again there is a disagreement, but that's bound to happen when there are over 900 people in the group, but it often gets sorted out in the end!  But we also share the celebrations, we share how we accomplish things, we share how we adapt activities to make them inclusive.  This place is SWAN UK.  It's our little exclusive, yet inclusive club, no diagnosis allowed (unless you are a graduate Swan).  It's our little sanctuary, where we share things we wouldn't share with other people, from silly stories about the most embarrassing thing that's ever happened to you, to heart wrenching emotions when things don't go so well, sharing pregnancies (not mine), to sharing losses.  But we all have one two things in common.

1. We have a child without a diagnosis
2. We want our children to have the best quality of life they can

For us, as a family of 5, the focus is on experiences, living life to it's full potential, disability or no disability.  I know most of Rowan's medical stuff, it just sticks now, naturally, but I'm not afraid to tell the doctor I don't know when he first smiled anymore, and make them look it up.  I don't care when he first smiled, my only concern right now, is that he keeps on smiling.  Unless he is in time out!

So, the other side of having no diagnosis, learning to appreciate the little things, and life live one day at a time, and experience everything you can, no matter how big, or small.  Battles will always be there to fight, pick them wisely, and don't miss out on finding out exactly who it is you're fighting for.  I have maintained my promise to myself, Rowan's favourite colour is red, his favourite programme on TV is Jamie Oliver's 15 minute meals, he likes watching stampybloodylongnose on youtube, he still isn't a great fan of messy play, but does love to bake (and eat) brownies.  He absolutely loves minions, but his favourite film to watch over and over at the moment is Rio/Rio 2, that's until Annie is out on DVD!  He loves Imagine Dragons, as well as Taylor Swift, however his favourite song is Red Balloon by Charlie XCX.  When he grows up, he wants to be an ice cream man, with Ayden driving the van, and when it's not hot anymore, he wants to be a taxi driver.  I know who Rowan is, I know who all my kids are (apart from the preteen, she morphs every minute into someone new!) and we're going to fully live our lives, together.

We're off to get sorted for our next new experience, a certain someone's minion birthday party.  Please click the links below to read other blog posts to support Undiagnosed Children's Day

What do you see?

When you look at this picture of Rowan, what do you see?

A little boy with ice skates on, a smile on his face, with a penguin called Rob?  That's what I see too.  In this quick photo that took less than a second to take, this what you see. You see what I want you to see.  You see the good part of this particular experience.  Would anyone really want to see the reality of the before and after of this situation?  Before this he was quiet, unsure, a little scared, it took quite a lot of convincing to get him out of the wheelchair and onto the ice.  He was only out of the wheelchair for about 5 minutes.  But it was the best 5 minutes of the entire experience.  He kept saying 'I'm doing it Mummy, I'm really doing it'.  He shocked himself!  He really didn't think he could do it.  He was proud of himself and so he should be!  This is what taking the photo is about, remembering the good part.  When I got Rowan and his siblings home from ice skating, the 'aftermath' kicked in.  The pain kicked in, his back, his legs, his tummy, everything hurt, he was exhausted, there was lots of screaming, lots of crying, followed by lots of leg rubbing, back rubbing, a warm bath, loud music, everything we try first, ending up with Tramadol, so he could relax enough to sleep, and once he woke up, he was in a better position to function throughout the day.

When you look at this picture of Rowan, what do you see?

A little boy, making his Beaver promise, proud of himself once again.  Smile on his face, happy.  He is now officially a Beaver!  (The youngest section of scouts if you have no idea what this is).  Maybe you see the TPN in his backpack, maybe you see the drainage bag dangling by his feet.  Maybe this disgusts you, maybe it makes you curious, maybe you don't even see them?  Maybe you see the cuffs rolled up of his jumper that's just that little too big for him.  This is a milestone in Rowan's life.  A huge one.  It's also something that he does with other boys (girls can attend too, but there are no girls in their group at the moment, just to clarify), boys his own age (actually technically he's the youngest right now, but not for long), interacting with them, a little bit of normalcy.  He is finally beginning to feel comfortable within that group.  You don't necessarily see his needs.  You can't see the TENS machine on his back because it's been playing up all week, and this takes the edge off a little bit.  You don't see the risks, you don't see the fact he has to have a specially trained adult with him at all times, you don't see the 2.5 hour nap he had before this, just so that he wasn't too exhausted to attend.  You certainly can't see the aftermath.  Within 10 minutes of being home from this fantastic milestone, Rowan transformed.  He was angry, very angry, screaming, shouting, I believe there was some swearing, there was certainly some kicking and punching (sorry Denise!), he was inconsolable, and irrational.  He didn't know what he wanted, nothing was good enough, he wanted everything but nothing.  As a parent, or any adult around him to be honest, it's hard to know what to do.  He is in pain, a LOT of pain.  Does that make it acceptable for him to behave like that?  Do you let him get away with it as 'he's in a lot of pain'?  Or do you discipline him, as it's unacceptable behaviour?  Sometimes all you can do is walk away.  Eventually I managed to calm him down (and apologise to Denise).  We talked (well he sobbed), put his pyjamas on, turned up his TENS machine, got him a hot water bottle, a drink, and Denise read him a few stories to calm him down.  It took 2 adults to get him into bed, and calm enough to rest.  This was the aftermath of going to Beavers for an hour.  Many people ask if it's worth it.  Is the pain worth it?  Is that hour of Beavers really worth the aftermath?  Absolutely.  If I asked Rowan if he still wanted to go to Beavers, even after that, he says yes.  In Rowan's life, I have to make decisions that don't always make sense.  Beavers offers Rowan something that he can't get anywhere else.  I have to balance Rowan's needs, his educational needs, his emotional needs, his social needs, as well as his physical needs.  His physical needs are just a part of him.

How about this picture, what do you see?

Rowan, and Jock.

Rowan riding a pony.  The last couple of weeks Rowan has started riding with the RDA (Riding for the Disabled Association fantastic organisation).  Anyway, he's on a pony, he looks so tiny!  Smile on his face, yet again.  Maybe you see the backpack.  This for Rowan, is physio, it's 30 minutes of riding a pony, up and down, playing little games, collecting toys to throw in a bucket, or flowers to give to Mummy (who's eyes are bloodshot and puffy, and leaking, struggling to breathe, Mummy is very allergic to horses!!).  Riding builds Rowan's core strength, he is really weak at the moment, but in time his posture will improve and strengthen, the way they need to sit on top of the horse pushes them to sit upright, and this will strengthen his core muscles.  So, why is he horseriding when Mummy is so ridiculously allergic?  (Honestly it's bad!)  Because why wouldn't I?  If Rowan was allergic, that's different, but he isn't, I am.  He needs this.  Rowan hasn't been having regular physio for quite a long time now, as he has gotten so weak, they haven't known what to do with him.  He started hydrotherapy, but that had to be stopped for safety reasons.  No one has been around to advise me, or help us.  I am the one who has spent hours researching, looking at what activities build up which muscles.  No one recommended horse riding, but as soon as I said he was doing it, the professionals were very enthusiastic about it.  Something else no one has ever suggested would be beneficial for Rowan, from any kind of perspective is a bike.  He can't ride a 'normal' bike, he doesn't have the strength, or the balance, and having accessories (drainage bag, TPN) means that it's not safe.  Why is there no professional helping me with these things?

So why didn't any other professional suggest a bike?  Something else I had to do by myself.  Because professionals don't seem to be able to see Rowan as a little boy, they don't see what I see, they don't see what everyone else sees, they see their speciality, not a child.  Rowan is now the proud owner of a bike.  It's a special bike, it's therapeutic, it's complicated as to how it's different to a normal bike, but basically he has to pedal more to make it move but by pedaling more, the effort needed is less.  Again, however it's normalcy.  Every other little boy his age has a bike, his brothers have a bike.  He now has a bike and he is very proud of it.  But once again, I was the one who had to look at the physio benefits, any potential issues, research what kinds of bikes were out there, and then try and find the right one, get quotes, and then apply to charities.  (Thank you Boparan Charitable Trust).

When I look at Rowan, I see a little boy, with a fantastic smile, a good sense of humour, an ability to manage the unmanageable, determination and a thirst for life.  He also happens to have some very specific and unusual physical health needs. Rowan just wants to be like every other 5 (very nearly 6) year old. he wants to go to school, he wants to have friends, he wants to ride a bike, he wants to go to beavers, he wants to play in the park, he wants to go on holiday to the beach, he wants to be a minion, he wants to go to parties and have friends over to play, and most importantly he wants to go and meet a minion (once we overcome the fear of 'people in costumes').  Rowan is a person, not a medical statistic, not an anomaly, not a hospital number, not an interesting case.  A child, an amazing child infact. 

When professionals look at Rowan, they see a system.  If they are a gastroenterologist, they see a gut, in Rowan's case, a broken gut, stomach distention, gut dysmotility, gastric output, blood results, weight loss/gain.  If they are a physiotherapist, they see weak muscles, poor posture, fatigue.  If they are an endocrinologist, they see a small hypothalamus, hypothyroidism, a lack of height, and blood sugar issues.  If they are the pain team, they see pain, chronic pain.

I can see those in Rowan, but I also see a little boy who deserves a quality of life.  He deserves to do these things that other little boys do.  And we just about manage them, by the skin of our teeth.  We do them, at a cost.  There is a price for Rowan to pay for being a little boy, and he'll pay it, over and over because he won't let his pain rule his life, he just needs a little hand with it.

Recently some decisions have been made, without my involvement, input or opinion, around Rowan's medical care.  When I have been informed of the new plan (after attending many appointments miles away from home, a plan was formed, a month later they had a 'professionals meeting' took place, and the whole plan was changed, the whole plan), I became very upset.  What I want for Rowan, and what Rowan deserves, often becomes blurred.  Rowan's quality of life often gets forgotten by doctors/therapists.  They have their goal in mind, and forget that their 'system' is inside a little boy.  I argued the plan, I tried to get my point across, my opinion, for the first time in a really long time was worthless.  The fact that I am the one that has to put this plan into place, against my instincts, is cruel and unfair, they are not the ones having to input the plan are they?  They aren't the ones dealing with the fall out of their plan, Rowan is, I am.  And there is more to my life than Rowan's medical care, more that it will affect.  There is more to Rowan's life, than his medical care, life that will be affected.

When you look at a picture, at a child, at a parent, at a situation, just remember there is more to the story,  There is always more to the story.  Don't judge their entire life on a snapshot.  Don't assume decisions you make are the right decisions for other people.  Involve people in decisions, however small they are.  

What you see, is not always what you get, you see what you want to see, or what I want you to see.  Don't just see, look.  Don't just hear, listen.

Unless it's this picture, this picture is exactly what it is.  If you want to see more this, come and like Rowan's page on facebook, Rowan's Reality, please.

                                           

Best Holiday Experince So Far!

I have been meaning to write this blog post for a while, however, I had to make sure I had booked my own tickets, and disability pitch before I wrote this and there is a rush on tickets, meaning I couldn't get my own!

This year, I took my children on their second ever holiday.  Last year we went to Devon, and this year we went to Dorset.  We actually went an event known as Camp Bestival.  For those who don't know, this is the 'family' version of 'Bestival' which is held on the Isle of Wight.  Camp Bestival is actually held in Dorset, in the grounds of Lulworth Castle.

Last August, as a spur of the moment thing, I booked tickets, I paid the up front deposit, and started to pay the weekly payment plan.  Camp Bestival is, as I said, a family festival.  Therefore requires camping.  A tent. My initial thought was 'uh oh what have I done'.  The second issue was that in order to go, I needed to be able to drive....s**t.....I hadn't even started lessons yet.  The third issue was to throw in taking Rowan, with his needs now drastically different to last year's holiday.  What the heck had I just done.  

But that was only an initial reaction.  Once I had gotten over that, we formulated a plan.  First step, driving lessons.  Now, for those of you who read my previous post, will know that in September we had a clinical error that turned our lives upside down, and this, therefore, meant that I couldn't take driving lessons for a long time.  I started to learn to drive towards the end of January.  With several hospital stays with Rowan, and the school holidays, I managed to go from a 'non driver', to pass my theory test first time, to passing my driving test on the 19th May.  That solved one problem!

Now the camping problem.  We didn't even own a tent, nevermind having never been camping.  I had never put up a tent.  I had absolutely no idea what I was doing, but with the help of some friends, we got a tent, and sleeping bags, roll mats, air beds, and that was pretty much it.  We booked the local campsite, which is literally a 5 minute drive from my house, for our first run.  We decided to go (my friend Denise and I) and put up this tent while the big kids were still at school, we would do all TPN at home for now, and see how we went.  It seemed to work.  It took us 45 minutes to put the tent up, not bad!  And it really wasn't as difficult as I thought.  The weekend went well and the children LOVED it.  Obviously the first night they were very over excited, but the second night they fell asleep, and they really loved it.  We had rain, and the tent stayed up.  We had thunder and lightening too, and it really was ok!

Because the first weekend was a success, I, once again spontaneously booked a weekend in Kings Lynn Camping.  This time our shopping list had grown, a gas stove (for coffee!! and porridge for breakfast) a carpet for the tent to try and keep it a bit warmer and keep the dirt more contained, a camping table and chairs for the children to eat at (after a few spillages), coffee mugs, metal cutlery, a light for at night time.  So, the second time we went, to Kings Lynn, we had a few more items, and it was even more of a success.  It took us 76 minutes total to put the tent up, and unpack everything, no messing about, and that was WITH the children around.  On the Saturday we spent the day on the beach.  The first time I have ever taken my children to the beach (the time last year doesn't count as the weather was horrible).  We went to Old Hunstanton beach, there was no 'tourist' stuff.  There was no arcade, no pier, no donkey rides, nothing.  Just sand....and sea.  I was slightly concerned how this would go, as there is nothing to 'entertain' my children.  But.....with buckets and spades, a load of sand, and some sea, shells and stones, we spent several hours on the beach, and the children LOVED it, they said it was the best holiday EVER.  My children are so easily pleased!  They built the first ever sandcastles, we buried Katrina in the sand, Ayden jumped over waves in the sea, and Rowan got over his fear of sand, sort of (but still will not go in the 'dirty sea water, it's got STUFF in it'.

So then, just before the children broke up from school, the preparations began.  Only, Rowan had to throw a spanner in the works, as usual.  On the last day of school Rowan landed himself in hospital, very unwell, with a line infection.  He had not had a line infection for a couple of years, but, with something going practically into his heart 24 hours a day, and having IV paracetamol 4 times a day for a year, that risk escalated, and it happened.  He was really poorly and for the first time in a year I had been reminded once again at the fragility of life for Rowan.  With thanks to a friend, once again, I didn't miss Katrina's leavers assembly although it was close!  She was leaving primary school, and the whole thing was VERY emotional!  Anyway, Rowan was unresponsive all day, and I was very worried about him, he was very hot, and he was hallucinating, he kept calling me Katrina, he was delirious, he was convinced he had climbed to the top of the IV pole, and slid down it, but it was ok as he held onto the TV.......At 730pm the nurses changed over shift.  We had a nurse who Rowan knows, and remembers, all of a sudden he wakes up, and he is FINE.  He asked me if he missed snack.  But he wasn't all that bothered that he had missed it (he started to show signs of being unwell just after 7am, and was in hospital by 815am).  He asked the nurse if she could make him a cup of tea when Mummy went home, and then play his ipad for a bit before he went to sleep again.  And this is exactly what he did.  The next morning I went to the hospital and he was absolutely fine.  We were discharged, and spent the next couple of days sorting out IV antibiotics, but we came out, with twice a day antibiotics at 12pm and 12am, for the next 10 days.  We could still go on holiday.  Phew.

Once we had been discharged, the plan was on to start organising and packing everything ready for our holiday.  The children were excited, as well as anxious, as was I.  The practise runs had gone well, but Rowan was 'well' (for him anyway) those times, this time the risk was that he went downhill again very quickly, as could happen with a line infection.  However it was a risk I was willing to take.  We were in disability camping, and I had everything crossed that he would be ok.  If not, we would just have to go to the nearest hospital and deal with it from there.  We drove to Southampton the night before, and stayed in a hotel.  My children have never stayed in a hotel before and they were so excited, as well as confused at how the whole concept works.  Especially around breakfast!  Just after breakfast (which apparently had fruit for pudding according to Ayden) we left and drove to Lulworth Castle.  It took a couple of hours, but it was ok.

Once we arrived we pitched the tent.  It was hard with lots of anxious children around, lots of questions, and being tired ourselves, but we got there in the end, after dealing with a meltdown.  We went and got all checked in, wristbands obtained, and off we went to explore, and find something to eat.  I have never seen so many gluten free options!  I was so happy!  (Apart from the pizza that was repeatedly contaminated on one evening).  There was however, a big big issue with Rowan's TPN fridge.  They had issues delivering it (with TPN), they wouldn't let the driver on site as he had no pass.  Then when he finally managed to deliver it, the medical tent (after it had been signed for) decided there was no room for it, and we had to find an alternative.  So, thanks to Alice, who did an amazing job, managed to obtain an electric hook up cable, and get some very nice medics to bring the fridge from the medical tent, down to disabled camping, I can tell you now, that was a long, heavy, hot, walk!  So we had the fridge in our tent for the week. Once again the kids were overly excited and didn't fall asleep until about 11pm.  But we were on holiday!

Cameron meets Michaela Strachen!

The rest of the week was filled with fun, IVs, more fun, sleep, more fun, sunburn, more fun.  There were live bands, comedy acts, fantastic food.  The kids had an absolutely fantastic time.  The atmosphere was amazing.  Cameron got to meet Michaela Strachen.  Katrina went to watch Sophie Ellis Bexter.  James played.  Ayden and Cameron were glued to the jousting.  Rowan absolutely loved Mr B the Gentleman Rhymer, I have never seen him so happy!  It was the best holiday we have had so far, by far.

From a disability point of view, it was great.  It was in a field, which sometimes caused issues with the wheelchair, but Rowan's front castors are quite small, however, it wasn't impossible!  Being in disabled camping meant we were close to toilets, and showers, and water, and we had electric hook up, and there were less people, it was more organised (we saw the chaos in the 'normal' camping!!!!).  No one really paid attention to the disabled toilets being for disabled people, which was frustrating, apart from, by the main stage, the 'disability viewing area' was manned at all times, and was ONLY for people with the disabled access wristbands.  We sat there a few times, chilled out, Rowan napped.  I felt relaxed.  No one cared that I was doing IVs in the middle of a field.  No one stared at 'the kid in the wheelchair' or with his drainage bag on view.  Nothing was too much hassle for the staff there.  He was just Rowan!  Ayden could run around and be himself, and I didn't have to keep telling him to calm down, or be quiet.  The children slept better, I am sure thanks to all the fresh air (or methane from the toilets, especially the compost toilets!)

We all came home, very very tired, it took Denise and I a LONG time to recover, but we are already planning for next year, and we have already booked the tickets, and are paying the weekly payment plan.  It was an experience I definitely want to repeat, and the children are already looking forward to.  It wasn't the cheapest holiday on earth, but it was definitely money well spent!  Obviously eveything inside is more expensive, but they can do that!  Next year we will do a BBQ one night, and remember to take our snacks with us (not leaving them in the tent!).  We will also look at getting our own electric hook up, so we can have the fridge in our tent from the get go.  We will also be looking at getting our own trolley, to pimp up, and so Rowan can rest better next year.  Also looking at getting another tent for Katrina to stay in, to give her her own space, next to ours.

Have IVs, will travel!

         

Not everyone is a morning person

Everyone can be themselves!

I am thoroughly looking forward to next year already.  I am also looking forward to taking our tent and paraphernalia on some more camping trips!  We are however, fair weather campers, but, 3 years ago I would never have dreamed about taking my children camping.  But, it really does work, fresh air, space to run around, no having to be quiet, everyone can just be themselves.  Just always remember 'there are no secrets in the tent'!

                                                                                                                                  

       

Clinical Errors.

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.