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.

Postive Post.

I have noticed that a lot of my posts appear to have a little bit of a negative twist to them.  I don't mean to do that, but our life is full of bittersweet situations.  Also, I am not a naturally positive person.  Experience has taught me that nothing is truly positive, and I handle life a lot better if I can see the negatives, and predict them, and then they don't hurt so much.  I am what would be known as a pessimistic person, and I'm comfortable with that most of the time.

I have decided to try and have as positive post as I can.  Without too much medical stuff in it.  Showing the world that while my family is so amazingly different to so many other families, and certainly local families, we are also very much the same, we just have to approach life differently sometimes, and think a little harder, prepare a little longer.

Rowan is a 'pal' of a charity called 'Post Pals'.  If you want to read about this charity then go here: Post Pals basically this is a charity that sends letters, cards, postcards and sometimes little gifts to the children who are 'pals' and their siblings.  It's a fantastic charity, and puts smiles on the children's faces on the darkest of days, often created by the cost of a postage stamp, and a thought.  Sometimes all these children need to know is that someone cares, that someone has spent a few minutes that day thinking of them.  Rowan has only been a pal since just before Christmas and LOVES his post.  As do the other children, especially when Rowan is in hospital, or has not been too well demanding more of our time than usual.  This year we went to our first every 'Post Pals Party'.  This is an annual event, where all the volunteers who write to the children throughout the year, and all the 'pals' and people who are interested, or support post pals, all get together and have a fun day.  The people who write to the children get to know the children a little better, you get to say hi, and thank you.  You put names to faces.  So this year we went for the first time ever.  I took Cameron and Rowan with me.  They had an absolutely amazing time.  Every single person at that party had something they could have moaned about.  It could have been one of the most negative atmospheres ever.  And yet, every single child and every single adult was smiling.  (Some, including myself were freaking out on the inside however).  Every single child had fun.  It was a place where no one cared about your difference.  No one stared, no pointed, no one had any negative comments to make.  It was one of those events that I will never ever forget.  As a parent of a 'pal' it was rather odd, all the people who write to Rowan, know what he looks like.  There is a photo on his page : Rowan's Pal Page (please look through the pals, choose one, and write a letter, or a note, or just write 'Thinking of you today' in a card, how about a list of jokes, or that story about your pet, use your imagination!!)  However I didn't know who ANYONE was.  So everyone was there 'Hello Rowan' 'Hi Rowan' and I'm stood there just smiling like a Cheshire cat.  I told a lie, I did know a couple of the other 'pals' and their families, and so it was a nice time to catch up with them, that wasn't in a hospital setting.  It was also good for Rowan to see his friends outside of a hospital for the first time ever.  And it was good to confirm to Rowan that boys have tubies too.  (He has only ever met girls with the same tubes and lines as him).

There were lots of things going on at the party.  From a HUGE inflatable slide, that I think made a lot of parents hearts skip a beat as their child hurtled down this slide, with a squeal and smiling from ear to ear, and I think a lot of adults actually went on the slide.  I will raise my hand and say when we got there, way before most people turned up, I went down this huge slide with Rowan.  He wanted to go on it.  I was determined to let him go on it.  So we climbed up, I sat him on my lap, I made sure all his tubes etc were safe, and he absolutely LOVED it.  I think Cameron spent most of the party on that slide!  There was a bouncy castle, and a ball pit, a Peppa Pig Treasure Hunt, a buffet, face painting, and a raffle where the children just kept on winning, and kept on smiling.  I kept noticing how many people were smiling. 

The other thing that happened at the Post Pals Party, was something that I will remember forever and then some.  Singing Hands were at the Post Pals party.  Who are Singing Hands?  Pardon?  You don't know who Singing Hands are? You haven't lived.  Singing Hands are a group of people who use singing and signing together.  If you don't have a small child, or a child with additional needs you just won't understand how amazing they are.  For us, there are three reasons we (and Rowan) love Singing Hands (if you want their website it's Singing Hands ).  When Rowan was in his 8 month stay at GOSH, stuck in his cot, I spoke to one of the other Mum's who did signing with her daughter, and we borrowed these DVDs from them, they were Singing Hands DVDs.  I watched them with Rowan, and he started to sign.  I honestly believe those DVDs, and those two ladies, have a massive part to play in Rowan's life.  If it wasn't for the signing, (which is always used with the words) he wouldn't be talking today.  He still uses his signs if what he is saying isn't too clear, or if he's not comfortable in a situation he sometimes won't talk, but he will sign.  It gave us something positive to focus on in such a negative situation.  Singing Hands used to go to the cubicle of the little girl who we borrowed the DVDs from to do a 'sing and sign' session.  One of the first times Rowan bottom shuffled, it was to get to the cubicle to go and see.  He didn't go in, he didn't make his presence known, he just sat in the middle of the corridor and watched.  When he was well enough, we started taking him to the Activity Centre at GOSH on a Tuesday.  This was the ONLY thing that was focused on Rowan being Rowan, not Rowan being poorly.  It was often the only time he would leave the ward, a change of scenery for him.  I started to plan my week around that trip to the activity centre.  It was a time that Rowan and I bonded over.  It gave us things to praise and celebrate, the new signs he was doing, and he picked them up so quickly! 

When we came home from hospital, Rowan used to ask for his 'hands' all the time.  We watched all the songs on you tube that had singing hands on or in them.  He was hooked.  It became a bedtime ritual.  Needless to say we bought him the DVDs, so every night, Tracy and Suzanne are in Rowan's bedroom, singing and signing.  Sometimes it's at bedtime, sometimes its at 2am when he can't sleep.  Singing Hands offers Rowan the distraction when his pain is bad.  In fact as I type this I am aware that one of the DVDs is in the CD ROM drive of my laptop.  Still in there from last weeks GOSH stay.  So Singing Hands were at the party.  All the children were amazing.  Rowan.....shy, quiet, selective mute, anxious Rowan, suddenly evolved into confident, lets get stuck in, trying to sing and sign the songs he knows so well, smiling.  It honestly made me cry.  And for Cameron, also usually a shy and quiet child, he was the showman.  Boogieing away, singing, signing, they have been as much a part of his life, as Rowan's and mine.  It truly was nothing but positivity.  So much so, during Rowan's GOSH stay, I took him, on Tuesday, to the activity centre, to see 'Singing Hands'.  Once again I scheduled it into his week, and he was even more involved in his signing.  You may think I am being a bit over the top.  But you have no idea how much a tiny thing like that means to you in a situation that is nothing but negative.  And I know a lot of parents in a similar situation feel the same.

Rowan may have a lot of differences to the 'average' child.  But he does the same things as other children too.  He has just started to do pretend play.  And he thoroughly enjoys playing with all kinds of pretend play toys.  From toy kitchens, to baking, hoovering, to happyland.  Amongst all the medical stuff, he does lead a fairly average life as a 3 year old.  It may take 30 minutes of medical care things before he can go to play, rather than spontaneously deciding to play, but he does still get to play.  And he plays with his brothers and sister.  And some of the time, they even manage to play together without scratching /biting /smacking /shouting /squealing /crying.

And some days he doesn't get dressed until 11am at the weekend, just like everyone else :o)

This is one of Rowan's favourite games.  The 'phone' in our house we have lots of kinds of phones.  Rowan likes pretending all kinds of things are phones.  From an actual toy phone, to a book, to his hand, and to his foot.  This 'foot phone' is currently a favourite.  And it makes international calls to his 'Aunty Vowry' all the way in the USA, as well as to Daddy who is sitting right next to him.  He does absolutely love telephones.  Talking of 'Aunty Vowry', this is someone else who makes Rowan smile.  Rowan and me both.  Valerie is not only an amazing lady, and an amazing Mom, and an amazing nurse, she is also an amazingly creative person, who puts smiles on hundreds (maybe even thousands!!) of children's faces who have feeding tubes, and other medical devices.  Valerie makes what she calls Belly Buttons.  Seen as I am having a bit of a 'linking' blog post, I will link you to her website too, where you will find Rowan and lots of other gorgeous children, with gorgeous smiles. Belly Buttons  Belly buttons are cloth pads, that go around feeding tubes.  The boring bit is that they collect gunk that leaks out, and they help with granulation (extra skin).  They help stop little (and big!!) people's skin from getting irritated and sore and just generally not feeling happy.  Valerie makes these sites happy.  It also makes these feeding tubes fun.  It makes them less medical.  Lots of children (including Rowan) thoroughly enjoy 'choosing' a pad (or two in our case) every day.  It gives them a little bit of control.  It teaches them that it's not so scary.  It makes them proud of their tubes, not terrified.  Rowan for sure has gone from hiding his buttons away, to proudly displaying them to anyone who wants to see them.  Valerie also makes 'Belly Belts' to protect tubes, and hold the feeding tubes.  And what's even better, is that these aren't about making money for Valerie.  She genuinely loves these kids, and loves making them happy, and loves seeing the pictures.  It is a labour (or is that labor) of love for Valerie.  We Love Aunty Vowry.

Although this is a fairly bad photo (blame the photographer) it is also one the most amazing photos I have ever taken.  The meaning behind this photo is more important than the photo itself.  This is Ayden, riding his little brother around the 'track' at his nursery.  Rowan went to nursery for an hour, a taster, a settling in period, evidence gathering type visit.  This is the nursery that Ayden already attends, and we can't wait for Rowan to attend to.  Ayden has done amazing things at nursery, despite the odds being stacked against him, and we're sure Rowan will do the same.  This is the first time, that Ayden has really been able to be a 'proper' big brother.  I know that sounds ridiculous, but he has never been able to do anything with Rowan.  Ayden, like every 4 year old is clumsy and heavy handed and we spend the whole time telling to 'be careful' around Rowan, that it's really only been the last few months they've really properly interacted.  Most of that interaction is fighting and shouting at each other, but sometimes you get little glimmers of the brother love I want my boys to have.  Ayden was massively protective of Rowan at nursery 'mind, it's my bruvva' as Rowan is trying to manoeuvre his way through the room, or the garden, 'Rowan look at this' it was genuinely all positive interactions.  They sat nicely together at the computer, and played TOGETHER.  It really makes me appreciate how much they have BOTH been through the last 3 years, and that actually, even though they spent the best part of 2 years apart, their bond runs much deeper than we ever realised.  It made me feel really proud of my boys.  Rowan climbed on the back of this bike (with Ayden's help) and sat down.  Ayden then sat on the front.  And he pedalled Rowan around the track several times.  They were both so happy.  They did something together that didn't need an adult.  Rowan relied on Ayden, Ayden was the big brother.  And he absolutely loved it.  When it was time to go, I left Ayden at nursery, and went to take Rowan home, and Ayden was absolutely heartbroken.  There was me, thinking it was me he didn't want to leave, and it was Rowan.  He didn't want Rowan to go home.  The bottom lip came out and he was genuinely upset.  It actually made me cry.  Through all the fighting, all the crap they have dealt with, they absolutely love each other to pieces.  There was not a hint of anything negative in Ayden when we left him.  I am so proud of them.

Some of you may know that we recently got a dog.  As if 4 children and 2 cats weren't enough.  We have a dog, yes we are nuts (I have proof on a piece of paper!).  His name is Luca, and he is 15 months old.  He is a Husky.  He is absolutely gorgeous.  Obviously, being a dog, there is a certain level of responsibility.  Katrina has taken on the job of 'Luca feeder'.  She feeds him twice a day, and it is one of her 'jobs'.  She seems to really it.  Luca, although technically still a puppy, (a rather LARGE puppy) is very well behaved.  Sitting down, he stands just a little bit taller than Rowan.  We were originally a little wary of him around Rowan and thought we may need to do a little bit of rescuing Rowan, where Luca knocked him over, or constantly licked his face, or something else.  However, Luca has been absolutely amazing with Rowan, and in fact all the children.  Ayden is not exactly gentle.  He hugs Luca so tight sometimes I think his eyes are going to pop out.  Ayden has fallen on him, stood on him, he's leaned against him.  He winds him up something chronic.  And Luca just takes it all in his stride.  I'm not going to say he's the perfect dog, he hates being left on his own and howls (sorry neighbours) and he pulls a lot on the lead, but we're working on it!  Generally though, it was one of the best decisions we ever made, and I don't for one minute regret it (the cats however may disagree, we're working on them too).  Obviously having a dog, means that he needs walking, regularly.  It's given me an opportunity to escape.  When I just want time on my own, the dog needs walking.  It's given me an opportunity to explore our local area a little bit (and get lost, which I did last week, and had to use google maps to get me home!).  It also gives us the opportunity to let Rowan experience things he hasn't really before.  He loves picking 'Fowers' and giving them to everyone.  Something so simple, but he hasn't ever really been around grass and outside spaces.  He does like going out.  He likes taking Luca for a walk.  Luca has increased Cameron's confidence too.  I think he likes being about to talk to his friends about his dog, rather than his poorly brother.  When we go out, people tend to comment more on our 'gorgeous dog' rather than our 'disabled son'.  Luca brings a lot of joy into our house.  And a lot of adventure too.

I'm just going to post a series of pictures now.  More of Rowan.  From laying with Daddy on the floor with his 'massager' that he was given by someone from 'Post Pals', a picture of the smile on his face when he received his new Bizzies, again, from someone through 'Post Pals' (notice how this charity really makes Rowan smile!?) to Rowan falling asleep on Daddy's lap, and picking the fluff out from between his toes.  All the medical things that go on with Rowan, and yet, underneath it all, or on top of it all, is a 3 year old little boy, just trying to live his life, the same as you and I, he just has to go about his a little differently.  His rules are slightly different.  And while you are teaching your child to not climb on things, I'm teaching mine how to safely climb on things to reach them.  While you're teaching your child to not touch things, and not eat with their fingers, I am teaching mine to do the complete opposite!  We all live life our own way.  There is no right way.  As long as it contains a smile, then it's your way.

 Rowan picking out his toe fluff (above)   Rowan realising he has 'big boy bizzies' thanks to Denise. (left)

                                                                             Falling asleep while having a 'Daddy cuggle'

 

                       'Look Luca, Fowers'

                                                                              Rowan's back is hurting, Daddy is fixing it with his massager, thanks to Ally.

The hospital stay like no other.

I know it's been a while since I blogged, and I promised a blog about our last hospital stay, so that everyone knows roughly whats going on (for those of you who are interested) and although I am sure no one is particularly interested, I'd like to think there is someone just wondering how it went.  Well.....I don't even know where to start!

We were due to be at GOSH on the Wednesday.  Because I can't drive, and we have a lot of medical crap things to take, we get hospital transport.  This consists of a prius (normally) coming to pick us up, with the driver wearing a suit, and the cars being ridiculously clean and tidy, and then you are going to put a child in their.  Well, on the Tuesday I realised I hadn't had the usual call to let me know what time I am being collected, so I decided to make a call.  Doesn't that sound simple!?

I phoned GOSH switchboard, and asked to be put through to transport.  They put me through, and it rang for ages before someone decided my call was worth answering.  I spoke to a lady who said I had come through to the wrong 'department' and they would put me through.  So.....I was then on hold to another 'department'.  Eventually I got through to a man, and I simply stated that i was being picked up tomorrow, and I just wanted to know what time as no one had phoned me to let me know and I wanted to make sure I was ready.  He told me that they didn't confirm bookings, sorry.  That was that.  So I phoned GOSH switchboard, again, and they put me through to transport, again, where the man told me I had come through to the wrong department and he'd put me through.....I'm sure I've been here!?  So, before I had chance to answer I was on hold again.  And I got through to the other 'department' who told me the same thing, and went to hang up, and I told them not to hang up, if that was the wrong 'department' they needed to put me through to the right 'department' where I was told they didn't have that facility and hung up.  I decided to give it one more time before I phoned the Endocrine time while banging my head against a brick wall.  So, once again, I made it through to the switchboard, I asked for transport, and before I even got as far as explaining what I was after, I told the man that I did not want to be 'put through' again, I simply wanted an answer as to what time I was being picked up, otherwise I would not be ready, and I would not rush to get ready, and I may just not get in the car at all.  And all of a sudden, he could log onto his computer, find the right page, and tell me, that I will be picked up in time for 10.....so that means I will be picked up about 10ish?  No, 10 is when they will drop me at my 'destination'.....so they will pick me up about 630am-7am.  I stated to him that next time, it's an idea to RING people to let them know what time they are being collected, especially that early in the morning as there is no way I would have been ready for that time otherwise.  Then he started blaming his collegues and I just said it didn't matter who's fault it was, it didn't happen and it should have, and now I know that's fine (well it's not).

So, my plan of take my children to school and collect my medications on the way home from school went right out of the window and I had to do a mad dash to the pharmacy to pick up my medication, and I was beyond glad that I did, because I'm not sure what would have happened without it (including emergency diazepam which I always have for hospital stays).  Then I had to hurry up and restock my TPN box, and pack everything for a 2 day stay.  Honestly the amount of stuff one small child needs is beyond ridiculous.  It looks a little like this:

So, I get up with the kids, get them ready for school, get Rowan up (connected to TPN, and feed) throw some clothes on him.  Chaos.  The man with the car knocks on the door, he parked in the wrong place, as usual, grumbling about how I really should tell people my front door isn't ACTUALLY in my road when they phone to confirm, to which I bite me tongue as it's 645am, I have about 3 hours to spend in a car with him, and I'm sure moaning about how maybe I would, if I actually got a phonecall confirming in the first place, but I don't.  I just ignore him and continue to get ready.  So, we haul all the crap stuff to the car, and I leave the 'men' to start packing the boot.  The driver asks me if I need the car seat (which i had already said I needed when I phoned up the day before) and I said yes please.  He pulls out a booster seat.  The kind I would put Katrina on.  No back, no nothing, literally, the ones you get for £10 from Tesco your local big supermarket.  Now, I wouldn't put Ayden on one of those booster seats personally.  But with Rowan, it's not only ILLEGAL, it's downright dangerous.  He would be as safe on that as he is just sitting on the seat.  So I stroppily said no, and went and got my own car seat (one more thing for me to have in hospital!).  Once the car was packed, and we got in the car, the man asks me why I got so stroppy about the car seat.

Ok, so, maybe you think I am a little bit out of order.  He is 3 afterall, how would they know?  Well, to begin with, a 3 year old, even an average 3 year old, would struggle to be safe on a booster seat like that.  I'm not even sure it's legal.  But, I get hospital transport ALL the time, and have this problem every time.  Everytime the driver ensures me that they will notify the 'office' that Rowan is not an 'average' size 3 year old, and that he needs a 'toddler' car seat.  And EVERY time they bring him the same booster seat.  I suppose you could say that it's my responsibility to supply the car seat if I'm not happy with their option, and you would be right.  Have you ever carried one of those car seats though?  I have to carry all that above, with a toddler car seat, and a 3 year old, connected to TPN and feed, from one end of the hospital to the other.  On my own.  Because it's against health and safety for the driver to help you.  Nor will they drive you to the door nearest the ward you are going, because they are not allowed.  So....I have to pile it all into the buggy, push the buggy with one hand, and carry Rowan with the other.  I COULD in theory ask for a porter to help me, but you have to wait 30 minutes for them to help you.  It just isn't worth it.  So, I put Rowan in a baby car seat.  The same one you bring a newborn baby home from hospital in.  If you were ever in any doubt to Rowan's size, this is him in his 'baby' car seat.

He is about 2kg off the maximum weight for the car seat, and he has about 2 inches left in height before he is legally too big for the car seat.  Then what?  Well by then I will be driving, and I will drive myself.  Although this will be a nightmare, and expensive to park, I am fully aware of that, it will also be the only way that I will feel that my son is safe on the journey to GOSH, and we can do it in our own time, stopping for coffee or the toilet.  Also, he will have a rear facing car seat.  Yes, I am going to rant a bit about car seats.  I have HUGE issues with car seats.  Why is it, it is seen as a milestone to turn our children to forward facing at 9 months old?  Is celebrating the possibility of increasing the risk to our child really something to celebrate?  It is proven that a child is at high risk of so many injuries including internal decapitation if in a collision and the child is in a forward facing car seat.  Why is it, in some countries the advice is to keep children rear facing until 6, others 4, and yet we are still at 9 months or 20lb?  Why?  It would appear that we do not care as much as our children.  Well, I know how difficult it is to get a rear facing car seat, once they hit the 13kg weight limit of the baby car seat, I have been looking.  And the cost is immense.  The big companies like Graco and Britax do actually make rear facing car seats for older children, for other countries.  Apparently the British do not want them.  Did you know they exist?  Do you really know the dangers and the risk?   Have you seen this video?  It is one of hundreds on youtube, showing you the same thing.  I know these car seats are expensive, but can you really put a value on your children's lives??  So, when I do drive, Rowan will be having a rear facing car seat.  Because of his hypermobility he is at higher risk again.  And then counter in all his additional tubes and lines and it is just so much safer.  So no, I will not be putting my 80cm 3 year old onto a booster seat!!

Rear facing vs Forward facing crash test

So, we arrive at GOSH and I make the journey from the car to the ward and arrive in time for 10am.  Just.  Really our problems started before we were even booked in.  The nurse came looking for us.  She walked past us 3 times.  You know when you know someone is looking for you, looks at you and thinks 'no' and carries on?  Well she did that 3 times.  She looked at Rowan, and I could see her thinking 'too small for 3' and carrying on.  In the end the play specialist pointed out that this was Rowan.  She then checked his date of birth 3 times with me.  Like he couldn't possibly be 3.  Things just got worse and worse.  The ward we were on, is used for all sorts of gastro and endocrine tests.  The first thing that always needs doing is weighing and measure.  We never weigh Rowan in a morning because he is full of fluid from the TPN and feed overnight so we weigh him at about 2pm.  Also, at this point, his TPN was in a KVO.  KVO stands for 'Keep Vein Open'  basically, his TPN had finished, but as a failsafe, it will run a small amount of TPN over an hour, as 'extra' so that his line doesn't block.  I ask the nurse if I can just disconnect his TPN and come back in a minute to weigh him, especially as the weighing room is busy.  I get told no.  So we stand in the doorway, of a busy room, where children are being weighed, measured, and their blood pressure checked.  It was chaos.  Rowan was clinging to me, too busy for him.  I bite my lip.  A place becomes available, and I ask the nurse if she thinks it may be better to wait until the room is less busy as.....I didn't get to finish my sentence because she told me no, it needed doing now, so that we could be shown our bedspace as she had lots of things to do.  After I made a comment that she either didn't hear, or refused to acknowledge about how I didn't realise that dependant upon a child's height, weight and blood pressure, depended on whether they qualified for a bedspace, or what kind of bedspace we got, and saying to Rowan maybe it's done on a star rating, so over 10kg gets a 3* bed, where as a child over 15kg gets a 4* bed.  The other parent near me was amused anyway.  The reason I asked about weighing him when it was quieter was because of what happened next.  I started stripping Rowan off, taking his clothes off, a little 5 or 6 year old girl was also being measure at the same time.  She started SCREAMING and crying, real tears.  My heart sank and I wanted to cry for her.  'Mummy is that what they are going to do to me' she cried, pointing at Rowan.  My heart broke for her.  The ward that we were on, is usually used for low level stuff, endoscopies, overnight tube changes, blood sugar testing.  So even though we are in a hospital, that doesn't mean other children are as used to seeing feeding tubes and lines as we are.  Children in hospital are already anxious, and although Rowan is comfortable with his tubes and lines, other children aren't.  We qualified for a bedspace.  But it clearly wasn't on a rating.  Rowan had a bed.  A big bed.  Not a cot.

I asked for a cot, because we had a risk assessment done at home and it was deemed unsafe for Rowan to have a bed.  That is why it took 5 months for us to get a hospital cot, because if a bed was safe, we'd have a bed.  The nurse informed me that there were no cots in the hospital (which I know can happen sometimes) and then she told me that Rowan would be OK in a bed, as he was 3 afterall.  I asked several times and we never received a cot.  This resulted in me being unable to leave Rowan AT ALL as he was unsafe.  I took Rowan to the toilet with me, I took him when I went for a shower, I couldn't leave the ward to eat.  My nurse kept telling me that we needed to wait for reviews, so Rowan needed to stay on the ward (despite being able to see the shop out of the window).

As I mentioned in a previous post my anxiety about this admission was huge.  I did what I could beforehand, talking it through with the right people and coming up with 'alternatives' and coping mechanisms.  One of which was walking away.  I couldn't walk away!  Another was take a break.  I couldn't take a break.  Go for a walk.  Go grab a coffee.  Phone someone.  Nothing could be done.  So I wasn't hugely surprised at my reaction, although the extent to which I lost my temper shocked me, and really shook me up.

     Is this what is known as a balanced lunch?

Continuity of care is not always a good thing.  The nurse was newly qualified, which was quite blatantly obvious and I'm not knocking new staff at all they need to learn.  What shocked me though was that she was new, and thought she knew it all.  I have experience with agency staff, and students, as well as newly qualified staff.  It seems that because I do everything there is no real responsibility for Rowan, therefore it's good for them to learn, using us.  And I'm fine with that.  I am usually bombarded with questions from them, and I'm ok with that, afterall that's how they learn!  And lets face it, Rowan doesn't exactly follow any book they will have read!  We have participated in lots of trainee doctors courses too!  This nurse however, argued with me over everything, from how I changed his nappy (yes seriously) to 'shouldn't he be in pants', to trying to tell me how to take blood and administer TPN.  It went on and on and on.  I did my best not to lose my rag.

We went in for what's known as a 'profile and fast'.  Basically they check Rowan's blood sugar regularly for 24 hours (Rowan's was every 2 hours) while he is on a 'normal' regime.  And then they 'fast' him so no TPN, no milk, no food, no juice, nothing.  And we wait.  And see how long it takes him for his blood sugars to crash.  I knew this, it wasn't a huge problem.  We started the 'profile' part and apart from the nurse irritating me by having to repeatedly stab him because she couldn't get blood out of him, refused my offer of help, and got stressed when he started getting annoyed and starting kicking her.  I asked if we were doing the fast straight after the profile and she said no.  So when I enquired a little more, because Rowan doesn't have something called 'Hyperinsulinism' (which is what our Endocrine consultant specialises in) he will have a 16 hour overnight fast.  Over my DEAD body!!!  So I enquired as to how that was going to work, as he needs TPN for calories, and that would mean him missing a WHOLE night of TPN, not only that but he would get dehydrated, his electrolytes would go crazy and they told me that's why we were staying an extra night to get him sorted out again after.  Then I asked what they expected me to do?  Sit up and wait all night for him to go hypo and then when he does, take blood and connect fluid?  They said no they would do that.  When we are trained to do TPN we are brainwashed connditioned taught that no one but us accesses Rowan's line, except in certain situations.  So there was no way I was prepared to let them access his line for something that I do.  So I had resigned myself to no sleep.

                                                     Everything is too high still.

The next day the profile finished at 10am.  The consultant came round at about 1130am.  He looked at Rowan, and then looked at me and said 'why isn't he fasting'.  I wanted to cry.  So I explained to him what had been said and he told me that just because he doesn't have HI, or a 'label' does NOT mean than he can be treated like a child who went hypo say once, while having a bug which is what the 16 hour fast is used for.  He absolutely agreed with me that it was unsafe to do a 16 hour fast.  So he spoke to the nurse and we had to do a 6 hour fast, on the day that we were meant to go home.  I was hoping to be home mid afternoon, but the test didn't finish until 3pm.  It was a long day.

I had issues with the nurse getting me blood bottles to take the bloods the night before the fast.  As Rowan's TPN was coming down early (to start the fast) I was told by the consultant to make sure he's TPN went up on time.  Rowan's TPN is connected at 630pm.  So at 615pm I start to hunt for my nurse to get me the bottles.  There are lots of nurses floating around making beds etc, but my nurse is nowhere to be found.  So I asked another nurse if she could get me the bottles and I was told 'he's not my patient'.  It was like a red flag to a bull.  I know full well that if a member of staff has to leave the ward for a prolonged period they 'hand over' their patients.  This nurse told me my nurse was on 'lunch' and I would 'have to wait'.  It would have taken her 2 minutes to find the forms that were already printed off, and get me the blood bottles, but she refused to.  My nurse reappeared at 7pm.  I asked her for the blood bottles.  720pm she brings me syringes in a 'non sterile' tray.  No blood bottles.  I decided to ignore her stupidity ignorance inexperience and use my own syringes (the ones she brought me weren't even the right ones) and my own sterile field, but we argued over blood bottles for 10 minutes.  She sheepishly went and got his blood bottles.  I was mad.  I was very very very mad.  At 730pm, I FINALLY got his TPN connected.  I put Rowan in the buggy, and I walked off the ward, I needed to calm down.  I lost the plot.  I, through gritted teeth informed the nurse I was leaving, and didn't even stop.  I walked for about 20 minutes, and decided to go to another ward and see someone else who's child was also in hospital.  I was there until 1130pm.  With Rowan.  No one phoned to see where I was, or if we were ok.  It just made me feel even more like no one really cared to be honest.  Even if they suspected where we had gone, why not just check.  It's very late for a 3 year old to be up, and we had already discussed Rowan's strict bedtime routine.

I appeared on the ward at 1130pm and considering at the time the ward is locked, and you need to go through two sets of locked doors, not a SINGLE person came out to ask if everything was ok.  I'm not actually sure if we ever had a named nurse at night, as I never saw one.  No one came to say 'I'm your nurse tonight' or 'if you need anything just find me' nothing.  So I settled Rowan and settled myself down for the night as I was up for 6am starting to wind Rowan off his feed.  This entails turning the rate of the milk feed down by 2mls an hour, every 15 minutes, until he ends up on 0mls an hour.  It takes a little over 2 hours usually.  The fast then began and everything was ok.  We got to 5 hours and his blood sugar was hovering.  At 5 1/2 hours he was hypo.  So the fast stopped, and he needed treating for low blood sugar.  I got him all dressed and sorted out to run to the shop to get him crisps, as that what he was demanding.  They told me that he couldn't leave the ward until he had eaten as he was hypo.  20 minutes later they bring him something to eat.  They didn't check his blood sugar again.  I checked it myself.  3.1.  I was not happy, he ate his food, and then I tried again to go get him crisps.  No, I couldn't leave the ward until they had checked his sugar again.  When I enquired when they were going to check his blood sugar again, they said in an hour.  I pointed out that he had a Hypo Plan, but they told me he'd be OK as he has not got Hyperinsulinism he would be fine.  In all fairness he normally is fine, but they didn't know that.  An hour later, they checked his blood sugar and now it's way too high.

Thankfully once the endocrine team were bleeped and they were informed that I was perfectly capable of dealing with Rowan's sugars, too high or too low, and they let us go.  We didn't get home until 730pm, but we got home.

I'm sure this was just a one off.  I'm sure it was just because we had an inexperienced nurse.  I'm sure it felt worse because mentally I was struggling and none of my 'coping' plans could be put in place.  4 days after I came home and I could finally write an objective email outlining the problems I had had, rather than losing my temper and putting lots of comments in that I would have regretted sending later.  I sent that email to the Endocrine team, and the Gastro team, and I know that further meetings have been held and hopefully this shouldn't happen again, to me, or to anyone else.  I am grateful that my complaints were taken seriously.  I also had apologies from  both teams, as neither were hugely accessible during our 3 day stay.  It should have been simple.  It rarely is.

So, lots of lessons were learnt.  We know Rowan can ONLY go 5 hours without eating anything, and that is ONLY if I've spent 5 hours beforehand 'winding' everything down.  Other than that, its been a steep learning to curve into finding out how 'other' wards handle Rowan and me.  I learnt a lot about how I manage situations, and I need to speak to my team.  I learnt to appreciate our usual ward just that little bit more.  And the team at GOSH learnt a few things too.

Let's hope the next stay will resemble something closer to what I expected.

                                                            Rowan's 'I can't reach' face.