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

Sometimes, you have no choice but to give up.

Just before I begin this blog post I want to say that I am not going to name names, because actually that would make no difference anyway, and would open me up to possible legal stuff going on.  I will use the abbreviation CIN for 'Child in Need Team' and DCT for 'Disabled Children's Team', SW for Social Worker and SS for Social Services.  Mainly because I am just lazy!

So.....Rowan went into GOSH for his admission and his liver biopsy was done.  We are STILL waiting for the results however.  3 weeks later, over 10 days after we were told the results would be in.  I have had contact with the team, and they are constantly checking for results but so far nothing.  Is that a good thing or a bad thing?  Some people say no new is good news, but what actually would qualify as 'good news' and 'bad news'.  Good news is what?  Things come back normal and we are no closer to a diagnosis, no closer to finding out what's wrong, no closer to finding a better treatment plan?  Doesn't really sound like good news does it.  Is getting an answer good news?  What if that answer is a terminal answer, what if that answer means that nothing can be fixed?  What if the results come back as showing something that will require an intense treatment plan that requires lots of hospitalisation and still no 'cure' (we are fully aware that there is probably no cure for Rowan especially as he still has no diagnosis).  Is that good news?  Or is that bad news?  I guess there is no such thing as 'good news' and 'bad news' at this stage, it's just 'news'.

So whilst dealing with all this, I had news that the DCT was closing our case for Rowan.  Basically, since Rowan has been born, we have been escalating up the 'social work team' ladder.  We have been stuck amongst all the changes to the teams, so in the last 4 years (from when I fell pregnant with Rowan) we have been under 4 different 'teams' with 7 different social workers.  Each team deeming us 'too complex' and moving us up the ladder.  So.....last year after the child protection conference (which SS initiated) we ended up with two 'teams'.  The DCT for Rowan (as he is a disabled child) and the CIN team for Katrina, Cameron and Ayden as they are deemed 'Children in Need' with having Rowan as their brother, their own needs, and an 'unstable' mother.  The DCT funded a childminder for the older 3 children on a Thursday as an assessment they did said that we would hugely benefit from a 'break' a 'day to ourselves' seen as our family is so full on all the time.  A day that I didn't have to rush to do the school run as our childminder picks them up from home and drops them off at 6pm.  They also sorted out a play scheme for us last summer holidays so the older 2 children went for a week each, and Ayden went to a childminder too.  They used to organise taxis for school runs when one or the other of us was away, I can't organise it myself, because of their ages, they need to make sure the driver is all checked, and therefore another organisation need to book it (even though it's the same company we always use). 

So....Rowan has his nursing care package which is funded 80% by health (so the NHS) and 20% by social care (SS).  Then the childminder started to be paid by the CIN team as it was for the older children.  SS made promises that they would input support so that I could do my DBT course as safely as possible.  So they'd put extra childcare in.  I was feeling fairly......supported?  OK so I'm not a huge fan of social workers, well, my social workers.  I hold a grudge because of the child protection process, and the amount of times they've promised things and taken them back.  But I did kind of feel like we were getting somewhere.

On the Monday we were off to GOSH, I checked my emails on the way.  I had an e-mail from the DCT SW which basically said that they were closing the case.  Now,  I was somewhat shocked, but they tried assuring me it would all be ok, and they weren't closing the case, they were moving him to a more appropriate team, to be with the other children so we have one social worker, not two, it will be more co-ordinated.  My team went nuts.  There was no question time, no discussion opportunity they were just closing the case, end of story.  No room for movement at all.  I was not happy either.  They were trying to assure me that all would be ok again.  We wouldn't really notice any change, everything would carry on as it was.  I don't handle change very well, and was really worried.  Who was now paying Rowan's care package as it comes from the DCT budget.  No one would answer me from the DCT as the case was now closed.  So I started emailing the CIN SW to find out, again she was ignoring my questions.  The worst things you can do to me is lie, ignore me, or hide things from me. 

I repeatedly asked over the course of the week (while I was in GOSH) what was going on and if someone could explain to me what was happening to the promise of support and I heard nothing.  So instead of stressing over it, I concentrated on Rowan's admission and keeping my mind focused on what was happening at the time.  If you've ready any of my posts from that week, you will know that it was pretty chaotic. Due to the stress of the journey home, both for Rowan and I, and the change of going from hospital to home, it always takes a couple of days for everyone to settle back to reality.

The Saturday was filled with cleaning, washing, tidying etc.  And then Sunday was a PJ day.  At about 2pm I checked my emails, just expecting the usual junk mail, maybe someone tagged me in something on facebook, or some company offering me 99% off deals.  And there appeared an email from the CIN SW.  Yes it was a Sunday.  The email basically asked me if I could update her on an appointment I took Katrina to, as she was completing the core assessment on Katrina before they closed the case.  Erm......hold on......CLOSE THE CASE? So I emailed back, just clarifying what she was saying and yes, they were closing our case.  All 4 children's cases.  So all that 'we're transferring Rowan to a more suitable team' stuff was complete crap.  When I asked how long until the case was closed I was told 10 days.  We had a meeting between that Sunday and the following Thursday and she was going to say something then with her manager there.  So actually they were only going to give us 7 days notice.  Once again, no room for discussion nothing.  So, I had lots of questions.  Here were my questions with the answers I was given.....

1.  What is happening to Rowan's care package as SS are paying 20% of it, how can they be paying a package for a child who has no open SS case, and if that's the case, who will be reviewing the package?  (basically every 3 months two people come out to discuss the care packaged and decide if we need more, or less hours, and one person is from the NHS, and the other is a SW, as those are the two 'organisations' funding the package.)

Well, it's highly unusual, but someone, somewhere, somehow will be funding the package still.  Don't worry.  Oh and we have no idea who will be reviewing it, probably just any social worker.  (Going to make decisions based on a child they know NOTHING about......going to be interesting!)

2.  What is happening regarding the childminder we have for the older 3 children?

Well, that will no longer be funded as you will no longer have an open case to SS.....(This is where I lost my rag, and responded with 'How the hell can you assess that I need a childminder, fund it, then take it away with no warning, all along you've bleated on about how my children need stability, and then remove one of the most STABLE situations they have right now.  One adult they trust that's not a parent.  And what is meant to be happen now, I have made commitments (OU) based on that childminders support).....and that is was NEVER going to be long term (although we were also never told otherwise).  They said they were not saying that we did not need or benefit from a childminder, but they wouldn't be funding it.  So we need to fund it ourselves, and any extra childcare we need will have to be bought in by ourselves.

3.  Ok, so what if I can't afford the childminder, that you as a services assessed that I needed a year ago, and despite the fact that the situation has not changed, you now decide no longer needs to happen?

Um.....well......tough (Ok, maybe they didn't say the word 'tough' but that's what I heard).

4.  Why are you closing the case?  (Ok I guess most people would have this as question one, but I was MAD)

There are no child protection issues, the children are well looked after, there are no concerns about them, we are good parents.  Therefore we do not meet their criteria as they now only deal with children on a child protection plan, or children they are removing from their parents.  So.....if you are a good parent, sacrificing your own health, your own sanity, your own life, then you don't need (or deserve) any help looking after your children in order to be able to look after yourself a little bit.

5.  You say there have been big changes in our circumstances, can you name some?

Lots of things have changed.  (Like what?)  Lots of things (Such as?)....well.....um.....

6.  We have a child in need plan, not all of the 'actions' on that plan have been completed, yet you are closing the case?  How?

All the actions are completed.  (So what about the ones about seeking help, for me to explain self harm to my children?)  There were no resources available, so there is nothing we can do.  (That's a rubbish excuse, that I have been fobbed off with for 6 years now, and you lot told me you would help me with it, and now it's not possible!?)

7.  So when do we actually lose the childminder?

Well we will pay her until the end of August.  Then it's up to you whether you continue to pay her or not.

8.  So, I assumed the help that was promised for me to do my DBT course is also revoked?

There were never any promises made.  (This is where my mental health worker chips in 'erm, yes you did, you asked hours, what the commitment was like, what CMHT (community mental health team) were asking for') and their response, was 'we understood the commitment, but we never said we would help with childcare.  There is nothing documented to say that we said we would help' (equally, when discussing the situation, not once did you say you were NOT going to help)

So, whilst all this discussion was going on, I started asking other questions, such as, what happens now then.  I had given up fighting.  What was the point? No one was listening to me.  No one was going to listen to me.  And I just started getting upset.  I worked my arse off of my kids.  I tried so hard to help myself, I agreed to therapy that I'd said no to for years, I started an OU course, and it feels like I have been penalised.  We were in a meeting with all these questions.  I started to raise my voice.  The SW told me she'd 'sort this' and 'phone them' and 'do this' and 'do that'.  I was seeing red.  So I told her to 'stop feeding the room bullshit, you are leaving in a week's time, these things have been outstanding for over a year and now magically you are going to solve all the problems in a week, bollocks'.  The SW manager pipes up, and tells me to calm down, and that SS closing is a good thing.  (Clearly I don't see it that way).  Basically at the end of the meeting it was agreed that we would step down to a team called the 'core offer team'.  They have service coordinators that help sort out messes likes ours.  We were under that team before, until we were moved to the DCT.  They are not social workers, but we felt so supported under them.  They do not have a budget though, so they can not pay for childcare.  I felt like I got the consolation prize.  But I had to admit defeat.  I wasn't going to win. 

My mental health worker tried.  He said things in that meeting that I really didn't want people to know.  And although I know some things are my fault, because, although I will sit here, on the Internet, and admit to the world that I see and hear things that aren't real, there are thing that I do not share with anyone, and only share with my mental health worker at a push.  I have real issues with trust, especially with professionals, and this is exactly why.  They make promises, then say they didn't make them at all.  Making me feel like I made it all up in my head.  I came out that meeting feeling awful.  Some of the way that I have been feeling recently was made perfectly clear, the amount of 'risk' I present to myself was also made clear, and yet, despite SS stating on numerous times that my 'mental health is just as important as the children's health' they basically told me at the meeting that they don't care.  My ever decreasing mental health state, has nothing to do with them, because they are children's services.  My mental health state is to be sorted by the community mental health team.  So all this rubbish that is told to families about 'working together' and 'looking at the whole family' is a load of rubbish.

Leaving that meeting with the consolation prize, I tried to move my focus to looking at the core offer team, and hoping they will be able to help me feel more secure.  A couple of days after the meeting, the SW emailed me again.  We do not fit the Core Offer Team criteria either.  They are refusing to offer us a service.  I felt like I'd been repeatedly kicked in the stomach.  I am trying to help my children as much as I can.  I do the work of several professionals, paid in love and smiles and cuddles by the children, and I do not deserve to have an identity of my own it would seem.  Basically my mental health worker told everyone in the room that I have a 'suicide plan, with intent'.  Now, it's not an attention seeking plea, it wasn't a 'last ditch attempt' to get them to keep the case open.  There are lots of the things going on for me that are causing huge problems for me.  I have had a really big downward spiral with my mood in the last few weeks.  And this whole situation made me feel completely worthless.  Like I meant nothing to anyone except my children.

So, where does that leave us now?  With a CAF.  Do I have any hope that this will work out OK in the end?  No.  Do I have any choice but to just let it happen?  No.  I had a CAF when I just had Katrina, single parent, mental health issue.  No physical health issues at all.  And there wasn't much that could be done for us then (before all the budget cuts).

Right now, I have given up fighting.  I have given up arguing with services over what I want and/or need for my children, and for me.  I have given up fighting to keep my mood stable.  It's through the floor and below.  I have given up fighting my way through each day.  I let chaos happen around me.  I don't chase things, I don't argue, I don't question things.  That requires energy that I just don't have.  Maybe not fighting, in time, will make things better.  If I'm not so hung up on being combative with everyone, maybe, even though nothing will be sorted, I won't be so stressed.  I attend appointments, but with no 'everything is ok' face.  I shrug like I can't be arsed, I am physically in the room, what more do they want?  Services are not there to help out struggling parents, who are saving the government thousands every year by doing the job of therapists, nurses, PAs, doctors, taxis, educators every single day, trying to enable our children to reach their full potential.  Don't ask for help if you need it.  The answer will be no anyway.

Since I originally type this out, my mood has further deteriorated.  I have shut down.  I don't want to be around people, I don't want to join in idle chit chat.  I do the bare minimum to get through the day.  Right now we are in limbo, no social work team, no caf, no core assessments completed.  No hope of Rowan starting nursery in September.  I don't want to reply to texts, or emails or phone calls.  I don't want to bring anyone else's mood down.  Like I said I do the bare minimum.  I had to take Rowan to the hospital today to get more antibiotic as the poor little dude is in pain constantly and is having issues with a recurring rash, and losing weight etc.  I don't want to be so miserable, but I can't change it, if I could I would.  I wouldn't even bite your head off if you insulted me or my children. 

It has also transpired, that this whole situation may have come about, because Rowan has no diagnosis, and therefore fits no box.  Therefore SS don't know what to do with us, what help we need, or where to send us for advice/support.  So they close the case because they have 1000s more that they do know what to do with.  Obviously that's not official, but it's the general feeling a lot of our team have, and a lot of people I have spoken to.

So for now, I am existing, not living.

Days 4 and 5.....

In the madness I completely forgot that I was updating the blog.  So, I will do a kind of 'catch up'.

Day 4

As suspected I didn't really get much sleep.  Between having to adjust rates of feeds and swapping them over and dealing with bleeping pumps, Rowan decided that 2am was a good time to be awake.  He then didn't fall back to sleep until 430am.  After an hour and a half of singing hands on my laptop.  Part of me was miffed, I just wanted to sleep, but he was so gorgeous signing along and mouthing the words that i just couldn't be cross.  430am he fell asleep, and there was no point me going back to sleep.  So I just laid there for an hour or so.  At 530am I got up and showered and sorted myself out.  Packed up my room, and left, to arrive on the ward for 7am.

Rowan is so good with not being allowed to eat, he seemed to understand.  At 10am, we were called, and we went across to the new theatres in the new GOSH building.  It was all rather posh, although they weren't ready for us (even though they called to say they were ready) and made us stand in the corridoor.   Now I'm not moaning, but if you are going to make people wait outside in the corridoor for 15 minutes, you really need to get some chairs in the hallway!!  Anyway, there was a bit of a mess, as the anaesthetist and the consultant weren't told that Rowan was allergic to chlorhexadine.  They had been told most tapes, and we'd cleared some that were 'ok' luckily they double checked with me first as they would usually use chlorhexadine for cleaning before and after the liver biopsy.

He went to sleep and all was ok.  I did a 'starbucks' run and got myself a coffee and grabbed a sandwich.  He was due to come back at about 12ish and I wasn't sure if I would get out for lunch or not after Rowan was back, sometimes he's clingy, sometimes he sleeps, sometimes he just screams blue murder.

NO ONE had told anyone that Rowan's surgery had been moved.  All of a sudden, there are lots of people running around like headless chicken's.  Rowan's gastrostomy site had some 'extra skin' (known as granulation) around his tube that wouldn't go away no matter what we did to it.  So they can do a special treatment called silver nitrate and it basically burns the skin away.  Seen as Rowan was having an anaesthetic, we had agreed with the gastro team that they would burn it off while changing the peg to a button.

For those of you who don't know the difference......this is a peg tube (the one with the white triangle on)

And this is a button......

Anyway, there was no silver nitrate in theatre.  So the gastro nurse and the gastro doctor are LITERALLY running around to find some.  They had though they had a couple more hours to sort it out as originally he was going to theatre at 130pm.  Once they had run around, and got to theatre, put scrubs on, it wasn't needed anyway.  Where they had to stretch the stoma (hole) to get a 'fatter' tube (the button is fatter) in, the granulation (extra skin) was now flat.  The Gastro nurse came to tell me what was going on before I got to collect him.  She didn't want me panicking.  Basically there was a LOT of blood and lots of his tubes and buttons were covered in blood, as well as the liver biopsy site.  While she was telling me what was going on they phoned to say he was ready to be collected.

One of the things you need to do with a liver biopsy is make sure they lay as still as possible afterwards to prevent further bleeding.  The gastro nurse said no way was he ready.  It had only been 10 minutes since they were finishing off the liver biopsy.  She told me to wait as they had obviously woken him up too quickly wanting to go for their lunch.  It takes a while for the nurses to co ordinate, and get all the emergency equipment sorted to go and collect him.

When we arrive, we have no idea where Rowan is.  They failed to tell people that the new theatres don't have a recovery area, they move the children across the hall to the 'old' building.  So after a hunt, I could hear him screaming at the top of his voice.  Far from calm.  He was not a happy bunny.  As soon as I picked him up he was OK, and calmed down, and he started demanding the cannula was out.  He is very funny about cannulas.  He hates them.  Normally, they don't put them in until he's asleep and we are usually lucky in that they take it out before they wake him up.  This time they left it in.  Why I will never know.  The nurse in recovery was very reluctant to take it out for him.  I explained (above screeching) that he had IV access for emergencies, he has a central line, if they don't take it out safely he will just pull it out.  She took it out for him.  He was very disorientated and I was very worried.  He kept saying 'I need a hospital, I need a hospital, ow ow, I need a hospital' it was very strange and he's not normally like that.  He then wanted all his clothes off.  He was not a happy boy.  Rowan is normally very self conscious about having his top off.  Stripped naked and screaming we took Rowan back to his bed.  He just continued to scream.

The gastro nurse came in and was basically saying he was like this because they woke him up too quickly she's seen it so many times before from working on a surgical ward.  He wasn't at all with it, and he was a horrible colour and he just wasn't right.  He then kept repeatedly saying 'I need a nurse, I need a nurse, I need a nurse'.  It took a good hour to calm him down.  Whilst screaming the endocrine nurse pops her head round the door to find out what's bothering him.  'He's post op' she was told.  'Pardon??' 'he's post op'........then there was the look......'He wasn't due to go down until 130 this afternoon' 'well it's been done and he's back' 'did they take the liver biopsy samples' 'as far as I am aware' 'um, no that can't be right, one of those samples needs to go into silver nitrate, and we have that already, and we are supposed to do that, which is why he was booked for 130pm so one of us is free'.......I just looked at her horrified.  She RAN to the consultant and then RAN to theatre and was chasing these biopsies around.  Luckily they were saved, and are being tested as I type.

I managed to settle Rowan down and he looked like he was going to fall asleep.  I grabbed the opportunity to quickly dash out to get myself a microwave meal for my tea so that after Rowan had fallen asleep I could actually eat.  I was literally 20 minutes.  When I got back, Rowan was on oxygen he was looking pretty awful, the nurse wasn't leaving him, he was on constant monitoring he looked very grey and very not right at all.  He was on 5 litres of oxygen.  I kind of stood in the doorway and just went........'what the hell? I can't leave you for 10 minutes can I!?' he had had a minor 'blip' while I was out.  Silly silly boy.  He was ok though and a couple of hours later he was back to normal.

At about 6pm, the gastro nurse came back to check all was ok, and she had a look at his button.  It was gunky and manky and she said she'd come up in the morning to help me clean it before we went home as Rowan would still be a bit sore.  Also, she came to tell me that Rowan's gastrostomy site (which had just had the button put in) and his jejunostomy site (the other button) were both infected.  I knew they were, I could just tell.  We had been putting an ointment on his site for 3 weeks and it was still there.  And now he had grown another bug too.  So we would have to start 2 high dose antibiotics to try and 'kick it' out of his system. 

We kept him dosed up on pain relief and kept the oxygen on but near him while he slept as the amount of oxygen in his blood kept dropping slightly but it was fairly uneventful.

Day 5.....hometime...

Rowan woke up demanding he go to the 'gym'.  Had missed physio yesterday as he had his surgery.  I really didn't think he was going to be that bothered, but he was practically begging me to go.  I cleared it with the doctor, then i cleared it with the nurses and we went to the gym.  He walked into the gym, I took his shoes off and he went 'bye mummy seeya in a bit, love ya'.  I just stood there in shock and just said 'bye then dude, have fun' he went 'i do esercising' (exercising) and off I went.  I went and packed all our things up to get ready to go home.  He LOVED going to his gym by the end of the week.  We'll have to see how he goes at home!

After I picked Rowan up from the gym and sorted him out with some lunch I enquired about transport home.  As usual, there was a problem.  The doctor was still waiting for microbiology to tell us which antibiotics Rowan needed to be on.  And then they had to be ordered from pharmacy.  Knowing what I know, I knew this was going to take AT LEAST 4 hours.  Wasn't really what I had wanted to hear, but, that's the way it goes sometimes.

Last night, we reduced Rowan's TPN by half the volume.  Just to see what he does with his weight.  To see whether he will then make up extra calories with food, or whether he will lose weight or what.  He had already lost 1lb in a week, and we're not really sure why, assuming it was the nil by mouth and lack of milk and food etc.  Anyway, I was all up for them reducing the TPN.  The aim was to get him off of TPN for one night a week.  One night a week where we wouldn't have to be home by 630pm.  One morning a week where I wouldn't wake up to bleeping pumps and have to get up regardless of whether rowan was still asleep or not.  One night where I may actually be able to get a night out!  One night where Lee and I may be able to get out together as we'd just need a babysitter trained up.  Seemed like such a good idea!!

Friday morning we had problems, about 11 his blood sugar was 3.7.  That's not too bad, but it's not ideal.  I decided to take Rowan to his favourite place on Earth.  The Disney store on Oxford Street.  He had never been, but he LOVES the Disney store.  I took all my emergency bits and bobs with me.  When I arrived at the Disney store Rowan was quiet and withdrawn.  As usual in a busy, unfamiliar place.  I took him in the lift to go downstairs (he was so excited) and he whispered to me 'Mummy, I hypo' I checked his blood sugar and sure enough 3.2.  Hypo.  So I waited the alloted 10 minutes. And I asked him again, and he nodded that he was still hypo.  3.1.  So I put milk into his new tube, and gave him a sugary gel (known as hypo-stop) and he perked up. 

I asked him what he would like as a gift from Disney Store as he'd been SO brave.  And he just stood there, and said 'I....don't.....know' so completely overwhelmed!  In the end he opted for a mickey mouse that he doesn't already have, a top, a cup and bouncy ball.  Yes he's spoilt rotten.  Then I stopped at McDonald's again to get him chips to make sure his blood sugars didn't crash again.

Got back to the hospital and the general feeling was that reducing the TPN wasn't going to work.  Transport was booked for 4pm.  We went downstairs to wait for the car.  It was a little crazy, trying to work out what kind of car we'd need etc.  Then it was stuck in London traffic, then it was ok, then it was stuck.  I was getting a little edgy, knowing Rowan had already been hypo earlier in the day, and then as we edged closer and closer to needing to connect Rowan's TPN, I wasn't comfortable.  Just as I was about to take Rowan back to the ward to put him on some dextrose the driver turned up.  I had to make a decision, so decided to risk it.  I made sure I had hypostop, and the BM kit, juice, food, eveything just incase.  We should be ok.  I kept telling myself it would be ok.

Someone remind me next time not to risk it!!!  Silverstone was on.  There was flooding everywhere.  There were 3 accidents on the M1 between London and my house.  The driver told me we'd be ok.  Add an extra 30 minutes to the journey but we'd go on the A1(m) to avoid the traffic.  WRONG.  We didn't get too far into the journey before there was an accident.  The driver was horrified.  He knew we had to be home as soon as possible, and we were stuck.  Absolutely stuck.  Then my nightmare unfurled.  Rowan was hypo.  Treating a hypo in gridlocked traffic was hard work.  Then his pain relief began to wear off too and there was nothing I could do.  The seatbelt straps were sitting on his new tube and on his wound from the liver biopsy.  I started to get upset because there was nothing I could do.  The driver lost his rag, and decided we'd go through all the little roads, stay as parallel to the A1(m) as we could and just cross our fingers.

It was a very eventful journey home, I won't go into the gorey details but lets just say that next time I will not 'risk it'.  I will think twice, and I will contact that TPN or those fluids.  The driver was AMAZING.   It's a shame I never did find out his name.  His distraction methods were fantastic.  Talking about the big warehouses with Rowan and they had a discussion about how there were space ships in there with 'green aliens' and sometimes 'purple aliens'.  We made it home just before 8pm.  It took almost 4 hours to get home.  But we made it.

Now just to wait for the biopsy results.  I'm not believing that these results will show anything.  I am so used to 'normal' being the result I'm not sure how I'd react if it actually shows anything, and I'm not stressing or worrying about them.  Been there, done that, and I've learnt from experience that constantly worrying about the 'what if's' is pointless, as so many times we draw a blank.  Worrying about it changes nothing, it can not influence which way the results come back.  I will just deal with whatever happens next.  If anything.

Day 3.......of 5.

This morning Rowan had physio and only cried for 10 minutes. He still didn't really do much physio but he's calming down. Which is a huge achievement.

After physio we went to the ward and made plans for tomorrow to keep Rowan as safe as possible. We had a chat with the Endocrine team about Rowan and we may need to increase his growth hormone dose as he's growing outwards but not really upwards, so looks fat bless him. We also talked about Ayden and where we are going with him, we are still waoting for an appointment to come through but Dr Hussain is going to try and sort things out for us.

Rowan had physio in the afternoon and took his cars to make his bridges in physio and, with only 5 minutes of screaming, he actually did some exercises :o) its a HUGE achievement for him. Physio is hard work but it will help him in the end.

Rowan and I went out for dinner, to McDs as he was so so good at physio. Unfortunately he didn't fall asleep until 9pm!! At 8pm I got a call to tell me that Rowan's surgery has been moved from the afternoon list to the morning list. So that meant no sleep for me basically. I need to turn his milk off at 230am and swap him to clear fluids, then at 530am turn that off, and then be on the ward for 7am to put him on fluids instead of TPN. Its going to be a long night!!

Day 2.......of 5.

So, we were in the patient hotel last night and neither of us got much sleep. I'm not sure why but it was so hot!!! I got up at 630am as we had to be on the ward by 8am. Showered sorted things out. When I came out of the shower, Rowan had a big grin on his face and told me 'i binished' (i finished). 'finished what Rowan?' 'Teepee' (TPN). He had disconnected his own TPN from his central line. This is incredibly dangerous for so many reasons, from a possible fatal line infection to a possible hypoglycaemic episode causing all kinds of complications not to mention the loss of precious calories! So chaos commenced and I arrived on the ward for blood tests to make sure he hasn't infected himself!! And an extremely stern talking to!

We had to be on the ward for 8am as we were having a lung vq scan. Well it didn't happen. There was a lot of technicalities that were causing problems for the last 8 months whoch is why this test is now 8 months late and today was no different. The gas that they use for the test didn't arrive. So the test couldn't be done. That was that.

There was a bit of a bed issue, Rowan needs a cubicle on the ward so jiggling patients around was necessary. They asked me if i was happy to stay in the patient hotel tonight and tomorrow night, save them a hassle, and meant I could come and go as i pleased. So thats where we are now. A little bit of a faff because I needed to connect hos tpn at the hotel and do bloods and then take the bloods straight back to the hospital, and then back again to bed. All a lot of messing about but its done.

Rowan isn't sleeping properly and so neither am I. He's not really doing is physio yet, we are still trying to get him to do as he's asked and not enter the gym screaming. So yesterday he screamed for 30 minutes. Today he screamed for 20 minutes. All I want is a plan and to know how bad this is, and how much realistically to expect from him. I don't want to push him to hard and make it worse. But I don't want to give in to him all the time either. I'm hoping that will happen soon ish. Maybe Friday. For now we just keep trying.

My mood is all over the place, rational, then irrational, I'm ok one minute and floods of tears the next. In control yet out of control at the same time. Trying to pretend its all ok when really its not! Lots to deal with. As usual. 3 days to go. That is all. This is how I manage hospital stays, I count down the days. 3 to go.

Day 1.......of 5.

I am going to do things a little differently this week. As many of you know I struggle with hospital stays and seen as that is where I am at the moment I wondering maybe blogging at the end of the day will relieve some of the thoughts and emotions that make me feel like my head will explode.

So today is day one. So far so good. We were collected on time and it took 2 hours. The driver didn't say a SINGLE word to me. Nothing. Was a very quiet journey by all accounts although reasoning with a 3 year old that a 'garbage fuck' and a 'fuck' were different. Of course he meant a garbage truck, and a truck, however as i tried to get him to call them 'lorry's' instead he thought i was offering him a 'lolly', and so he began a mini tantrum over a lolly, or lack of.

We arrived in one piece, managed to place our belongings in a 'luggage storage' area in the 'patient hotel' and dashed to the 'lagoon' which is the new hospital canteen at gosh. While i was impressed with the space and the difference compared to the old one, Rowan was fascinated with the 'mickey mouse club house' and the fact he can choose snippets of mickey mouse to watch on the tv, yes this is IN the canteen, sorry Lagoon.

Rowan attempted his first 'physio rehab' session today and it didn't quite go to plan. The session was for an hour, Rowan screamed for 30 minutes, then was cuddled for 30 minutes. He has learnt screaming gets him what he wants as he is so LOUD! Tomorrow we will try again however. Now that the physio team know its all noise and i'm happy for them to tell him to pack it in.

We then popped to the ward we will be on tomorrow, sorted out some emergency meds for me (easier to get it faxed over from my psych than to try and see a 'crisis team' in London psych). The gastro CNS also came to see us to swab Rowan's feeding tubes again as it would appear the infection is there, and the fucidin cream we are using may well be causing contact dermatitis. Anyone have a brick wall I can bang my head against? With the green output that is leaking from Rowan's sites he may also have a gut infection. We will have to wait and see when the results are back Thursday.

The plan for the week is at least one physio session every day. Metabolic review, Endocrine review, Gastro review, peg change, liver biopsy, lung vq scan.

Tomorrow at 9am is the lung vq scan. This I am in no way looking forward to. Whether i approach it with a positive mental attitude, or whether i approach it expecting it to be awful I haven't yet decided. There are pros and cons to both. We shall see how my mood takes me. One day at a time.

1 down, 4 to go. (oh and yes it is my birthday today, no i haven't done anything nice, and no i have nothin planned)