Birthday Bug!

Monday was Bug's (also known as Cameron) Birthday.  He is a huge 7!

7 years ago, I was 19, newly single (my husband had left me), and terrified.  I dashed to hospital and out came Cameron.  Only 3 and a half hours of labour.  Cameron was a 7lb 8oz baby.  The midwife wrapped him up in a blanket and handed him to me.  Then she left the room to run me a bath.  When my Step Dad came in to see 'the baby who had no name' he unwrapped him, and he noticed he had a 'deformed ear'.  I didn't care, my baby was perfect in my eyes (although why the midwife didn't see it I don't know.)  I had wanted to called 'the baby' Oliver right from the day I found out I was having a boy.  His 'sperm donor' wanted to call him Tristan.  So how did we get to Cameron?  Well......

When 'the baby' was born, he just didn't look like an 'Oliver'.  I know it sounds stupid and some people will say to me how can he not LOOK like an Oliver, what does an Oliver look like.  Well I don't know, but when I looked at him I just couldn't call him Oliver.  So I wondered if maybe Tristan would suit him better, but no, I couldn't see that either.  So he was just 'baby'.  He was literally 20 minutes old when Katrina came in.  She entered the room, with her hands on her hips, aged 2 and a half, and wanted to know 'where's by baby brother Cameron then'.  I have no idea where it came from, as far as I was aware she knew no one called Cameron.  I looked at him, I looked at Katrina, and that was that, from then on he was Cameron.  Just before I registered him, I looked at him, still unsure whether I could called him Oliver, but no, he was definitely a Cameron.

The first year of Cameron's life wasn't easy.  He wouldn't really grow very well, he was constantly sick, he had lots of hospital admissions and lots of appointments.  We tried almost everything going.  He exhausted both our local hospital, and the nearest children's hospital with tests and poking and proding, and still no real answers.  At 18 months old I was told I'd be extremely lucky if I still had him when he was 2.  He was losing weight so quickly, acting like a starved child.  He'd search the floor for crumbs, despite the fact he'd JUST eaten.

He'd had tests for so many different things, and everything was negative.  One doctor at Brighton Children's Hospital decided that he would send Cameron to GOSH to see his 'friend'.  This friend was our (now) favourite doctor.  He took one look at Cameron, and decided he needed an endoscopy.  From this we were told he had a rare form of Coeliac's disease (see previous post 'it's only a diet, right?).  I remember that day like it was yesterday.  The day I thought my whole world had ended.  I was 21, and I was still getting used to parenting on my own.  I went to see the Dr, and he told me I had to take gluten out of Cameron's diet.  What the hell was I going to feed this small child, with bread and pasta and cakes, sausages and burgers, chicken nuggets taken away.

We survived it.  And we still survive it.  It just felt like it was one thing after another with Cameron, the steroids he needed caused awful bruising and people used to look at it like I was doing somethin wrong.  I felt so self conscious being only young with two small children and one on the way, that I avoided going out if possible.  I didn't need people assuming something bad was happening to Cameron when it was merely the steroids, and him learning to walk.  Cameron didn't walk until he was 23 months old.  He met all his milestones quite late.  He struggled (and still struggles) with his speech.

At the age of 3 Cameron was give a diagnosis of 'microdeletion of chromosome 16p11.2'.  I accepted it and moved on.  He is who he is.  He is my bug.  Nothing has come naturally for Cameron.  Actually that's not true.  His ability to love everyone and everything, animal or person, is natural.  He sees the best in people, before he sees any flaws.  He has so many friends at school, I'm not even sure if it's physically possible to not like Cameron!  He appreciates everything, no matter how tiny.  He is shy and quiet, and very well behaved 98% of the time, but somewhere beneath the surface he has an amazing, inspiring determination to defy the odds, and get on with his life.

On Cameron's birthday I found myself appreciating Cameron so much more.  5 years after we were initially told he would be alive.  This year has been a huge year for him.  He is no longer bottom of the class.  He is reading, he is writing, he has friends, he has been going to parties, he has been really well health wise, he is starting to have his own interests, his confidence is ever growing, his personality is growing too.  He is turning into an individual, and while I should have realised earlier, I didn't.  Katrina has always been very independant and always had her own personality, Cameron hasn't really, or maybe I haven't realised because I have been so consumed with the medical stuff.  I am starting to learn who Cameron wants to be, not who he thinks other people want him to be.

For Cameron's birthday we took him to the circus.  It was a rare treat.  I'm not actually sure we've ever done anything like that for the children.  Katrina went out with Brownies but all 3 boys thoroughly enjoyed it.  Then on the Monday Cameron went into school covered in the mandatory badges, with the usual bags of sweets for his class.  He had a good day, and is having great delight at telling everyone 'I was 6......now I'm 7!'.  And although he really isn't growing, and he really is tiny compared to all the other children (he's the size of a 4-5 year old) he see's himself as 'bigger'.

Don't let anyone tell you what your child will or won't do, nor how they will turn out.  Be proud of who they are, not worry about who they should have been.  Don't write off 'young Mum's' and don't write off 'Mental Mum's' either.  Cameron continues to amaze and inspire us, and it's exciting watching his character growing, I don't know who he'll be when he's older, I don't know what he'll do, I know at his age my parents had my life mapped out.  I don't have Cameron's life mapped out, I dont' care what he does in his life, as long as he does it happy, and content, and staying true to who he is.  He may have had a crap start in life, but he hasn't let that define who he is, and we won't let it either.

Everyone who decided to turn their back on Cameron as a 'poorly child' or me as a 'young attention seeking mum'....screw you.  You missed out on the most AMAZING child.  He has taught me so much, he has changed my life, and my outlook on life for the better.  I have learnt so many things that I never would have learnt if it wasn't for Cameron, and while some things I'd rather not have learnt, I wouldn't change him one little bit.  Cameron may not be the 'perfect child', or a 'picture of health' but he's learnt things about life that some adults are yet to learn.  Those who turned their backs on us should be ashamed of themselves, and embarrassed, but I know they won't be, they are living the life they always wanted, selfishly, while I gave up my life for Cameron, I gave up a job I loved, but I loved Cameron more.  You don't deserve to be in my son's life.  I hope one day, when he wants to come and find you, you kick yourself.  And the only person to blame is yourself. 

But for now, I will continue to love Cameron, no matter what, unconditionally, I will continue to support and encourage him in WHATEVER he wants to do, or wants to try, whether I think he can do it or not, I'm not going to be the one who tells him he can't do something.  You never know until you try!

I love you Bugless.  Happy Birthday little dude.  Mummy will love you forever.  No matter what.

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.

A genuinely good day

So, this was that week, that I thought was going to be the most important week of the year.  Isn't that what I said? Well, I may retract that, or maybe I won't.  I'm not quite sure yet.  It was a complicated week.  It was a rollercoaster, and my mental health was tested to the limit, and then some.  I learnt a lot about myself this week, as well as the boys.

So, I will start at the beginning.  Monday.  Monday we took Cameron and Ayden to their outpatients appointment at GOSH (Great Ormond Street Hospital).  I took Katrina to school, after being told I was a 'crap Mum' and all that stuff that goes with it (all because I wouldn't let her winter coat, it was so hot it was ridiculous and she wants to take a coat 'in case' that's a whole different story that's for sure!) and said the angry 'goodbye, have fun at your friends, come home in a better mood' goodbye.  I went home and we had a fairly relaxed couple of hours, before we left the house to head to London. 

We decided to leave a little early, rather than just go to London, stressing the train is delayed and we're going to miss the appointment.  So our appointment wasn't until 420pm but we got the train at about 11.  We arrived in London around 12ish.  We took the slow walk down toward GOSH, apart from it being ridiculously hot, it had been a nice journey.  The boys behaved, we took lots of pictures, it genuinely was lovely, and the day just continued to be relaxed, calm, and enjoyable.  I was a little disappointed that Katrina wasn't there to join us, but she was having a whale of a time at her friends house, and I have to remember that she is 9 now, and just because she isn't with us, doesn't mean we shouldn't have fun.  So, off to Nandos for lunch!! Rowan shocked us all by eating not just chips but chicken too, and KETCHUP!!!  We popped to get some cold drinks (my god it was HOT) and decided we would go to the park with the boys for a couple of hours before our appointment, get them nice and tired so they weren't hyperactive on the train on the way home.

Rowan was AMAZING.  He LOVED the slide, and he loved the swing, and even more importantly it's the first time we have been to a park and he can play with his brothers.  In a park, there are things that all my boys need help with.  So rather than just having to help Rowan the whole time, they all needed a bit of help with something, so they all got a little bit of Mummy time.  It's not often that I just appreciate doing 'normal' activities.  But the park that day, I just felt like Mummy.  Pushing my boys in the swing, coaching Ayden to believe he COULD do the rope walk thing, and showing him how to climb the rock wall and use the fireman's pole.  Laid on the witches hat with Cameron, just relaxing looking at the sky having a cuddle, while he tells me he loves me.  I wasn't anxious about the appointment (thank you Diazepam) and I had no expectation, I had no mission, it was just an appointment.  The boys were on the zip wire (honestly Coram's Fields is like no other park my boys EVER have been to!) and Rowan was in the buggy, resting, his legs were hurting.  And my phone goes.  It was the doctor's secretary asking me if we could make the appointment now, the doctor has no one else to see, and if we can make it now he'd really appreciate it.  So off we go, it really was hot, and I wanted to leave on a good note, not with me screaming at the boys, and it would be nice to not be quite so late home.

So we did the ridiculous booking in process.  Anyone who has been to GOSH will know how RIDICULOUS the outpatient thing is.  Not only is the outpatients not actually in GOSH but building next door, which is another hospital which confused me the first few times, the process is a little like this.....and no exaggerations.  About 40 minutes before your appointment, you stand by the lift......you wait 10 minutes for the lift to make it to the ground floor, and it's full, the lift empties out, and then before anyone manages to get in the lift the doors close and it's gone.  So you press the button again, repeat the process, but actually manage to get in this time.  There are only 2!! Lifts, for all those GOSH patients (plus the other patients).  There are stairs, but the point is that children are in pushchairs or wheelchairs, or just can't climb stairs, and there are 2 lifts.  So in the lift you get, and you have to go to the first floor (or second floor I can't remember).  You get out of the lift, and 'book in' once you have booked in they tell you which floor to go to, to actually attend your appointment.  So we repeat the lift saga, however it's more difficult this time because you aren't at the bottom, so most of the lifts are constantly full.  You make it to your floor, finally, where you have to book in AGAIN!?  I just don't understand this process, and I will admitt I am probably one of those parents that gets cursed because when I go to TPN clinic I don't book in at floor one and just go to the right floor and book in there.  (The lift situation is just ridiculous!).

Anyway, today, I decided that I wasn't going to do that.  Lee doesn't like lifts, so I sent him up to book us in, and I got in the lift and went straight to the right floor (experience teaches you which floor you need to go to) I took the boys and did the 'oh my gosh your face and hands are filthy your get backside into the toilet and get cleaned up NOW' thing.  Once they are all presentable I book us in on the right floor (this also gave Lee enough time to book them in on the correct floor).  The kids get to play a bit, and they have fun with the toys, and fighting with all the other kids over the little tykes car.  And then the doctor comes out, lets call him N and we enter the appointment room.

Now, usually entering 'the room' fills me with dread and anxiety.  Always.  But, either the diazepam was good that day, or the fact I had nothing I needed to say or achieve helped a little bit.  Maybe it was the fact I wasn't on my own, or maybe it was the fact that N and I have a long standing professional relationship where he understands me and how I work and what I need to hear and how, which makes me feel safer than usual, I'm not sure.  N sits there, with that big grin on his face, you know, the one I expected, when he looked at Rowan, he actually couldn't stop looking at him.  So we talked about Cameron first.  Cameron is going at an expected rate (very slowly but ok) the problems he is having are related to his desire to eat things he's not allowed.  It's not a great idea, but it's a process he is going through because of his age, wanted to test the boundaries.  So, we know that he still can't really tolerate anything.  We call it 'challenging' when you try them with something, you know previously made them ill, just to see if it's still the case or not.  For Cameron, it is.  We also found out, that, although not medically documented, it is well known that children who have gut inflammation and coeliacs disease, can be overly emotional.  This is DEFINITELY the case for Cameron, and it now gives me weight to telling people who want to bounce him backwards and forwards from CAMHS (Child and Adolescent Mental Health Service) no.  We have now been there twice.  No more.

Ayden was next, we discussed the diet and his weight and decided that he is doing slightly better than Cameron, he copes with Alpro yoghurts (soya) but he can't eat say, something else with soya in, before we have a problem, so it's just one tiny step at a time.  N said we were doing everything right, keep challenging, one thing at a time, and see how things go, he said we know what we're doing, and he is more than happy for us to drop him a line if we need to, we know where he is.  We talked about the issues we have had with Ayden since we saw him last, so his hearing and his grommets and adenoids, and we were told that that is VERY common in children with multiple allergies.  But he's glad it's now all sorted, and we were proactive in that.  Then I mentioned his growth hormone deficiency, and his hypoglycaemia problems.  He wasn't happy.  One of the things I like about N is that he does what the kids need, no matter how much that may upset other people.  So in our case it's upsetting our local team.  He is referring Ayden himself to the same Endocrine doctor that we see for Rowan.  There are lots of reasons why this is a good idea, so it's the next step for him.  This may mean however that the nasty tests we have done for Ayden already, will have to be redone, it depends how willing our local team are to hand over information.

Then, N shuffled his paperwork, and cleared his throat.  Usually code for 'now we need to talk about something serious'.  And my heart stopped, and panicked for about 10 seconds.  Back in January N took bloods from all 6 of us, for genetics we were told.  They have been stored since then (somewhere in a fridge).  This blood will, next month, be sent off for testing.  It may sound silly that I didn't really understand what this blood was for, but there are little bits of blood from us all over the world.  But this blood is really important.  Cameron has had a genetic test done called a 'Micro Array' test, which shows all the little chromosomes and which bits are deleted or duplicated, or other kids of rearrangements.  (this is how we found he has 16p11.2 microdeletion).  We checked Ayden and Rowan for this deletion and they do not have it.  N has decided there is no point doing a micro array test on Rowan and Ayden, because actually, if they have a deletion or a duplication on one or more chromosomes it doesn't really say a lot because there isn't a lot of information on most of the rearrangements anyway!  So, he was saying the micro array test is like smacking their genetic make up with a sledgehammer.  This 'new' testing, is like chipping a bit off, and going through it with a fine tooth comb.

The bloods will take 4-6 months to come back, and it may tell us the gene that have caused the boys problems.  If we can find the gene (a big IF) we may be looking at better management plans.  N was saying, that he is unsure whether it's the boys diet that's helping, or the periodic steroids they have.  If we can find the gene, then we may be able to find a better plan.  From there, we may be able to get the boys back to eating whatever they like.  Maybe.  If we find the gene, and we can find out what is 'wrong', we may also find out whether Cameron, Ayden and Rowan actually have the same 'diagnosis' just with varying degrees of severity.  N was explaining how he believes Rowan may have the key to solving a lot of problems in the world.  Our little 11kg, 80cm tall 3 year old, needs 5000 calories a day to grow.  If we can find out WHY he needs those many calories, and it can be recreated, obesity wouldn't be a problem no longer.  He also stated that a lot of people would like to get their hands on Rowan, and run tests and poke and prod. 

So, here comes our new role as Rowan's parents, learning how to say no.  No you may not run that horrible nasty test that is just there to satisfy your curiosity.  No, you may not take more blood.  No, we are not staying in hospital.  Picking and choosing which tests they can run and which ones they can't.  We're not going to say no to every test, but there needs to be a reason to run the tests, we need to start asking people to justify their requests for the various tests.  Not just on a curiosity basis, he is a 3 year old little boy, not a medical 'thing'.

It was an appointment packed with information, I'm glad we went early.  N got to go and watch his son play football for the first time in a VERY long time.  Some will say that I don't need to know that, he is a doctor, but, it also shows he is human, and a parent, just like us.

I will post in a little while about our hospital stay with Rowan.  I don't want to muddle to the two, and I don't want the positives of this day be lost amongst the other post.

Dear Mum in the Playground.

Dear Mum in the Playground,

I am writing to ask you if you could please stop your whispering and pointing and giggling with your friends, while clearly talking about me and my family with your friends when you see us in the playground.  Do you really think I haven't noticed?  Not only can I see you, I can hear you, I'm not stupid and I'm very observant.  You also need to remember that I have 4 children, and sometimes my children hear you as they walk up behind you, they too have ears, and are not stupid.  I know you're gossiping about us, and I'm sure you have nothing better to talk about than me and my children, and I suppose I should be flattered, but actually I'm just annoyed.

Yes, Rowan is in a wheelchair, and yes he has a tube coming out the bottom of his T-Shirt sometimes.  Does it really warrant a point and a whisper, so that all your friends look and stare, and then all go back to whispering.  Honestly, it used to happen in the playground and I'm sure we're all a little old for playground games and gossiping aren't we?  Maybe you have nothing better to do with your time than gossip? Why don't you come and talk to me, say 'Hi', smile, 'good morning' or even something as mundane as mentioning the weather.  Or if you want to know what that dangly thing out the bottom of his T-Shirt is, come and ask me, it may make your gossip not only factual, but also perhaps a little juicier.

I know you think you're better than me, and that's fine, you probably are.  I know I'm stood there in my trainers, hoody and jeans, no make up, hair scraped back, but I just don't have time to spend putting on make up.  I wish I did sometimes.  Between getting up, and getting to school I have done about 100 things.  You're lucky I remember to actually get dressed myself.  And by the time I pick the kids up, I am ready to throw the towel in.  Can you imagine doing the school run in high heels, it's a mile walk each way by the way, not to mention all up hill to get there.  Not only that but we have 3 school runs a day to do.  Between those school runs I have performed more medical processes that most nurses.  Between medications and therapies, and popping to appointments, I also have to remember to get that TPN out the fridge, and make sure we have something for dinner.  Only, I have to make sure I have enough for 2 seperate dinners, sometimes 3.  I have cleaned my bathroom and done 2 loads washing.  I have washed up several times, and swept my kitchen floor, twice.  Can you imagine doing that in heels and pair of expensive trousers or with my hair down, leaning over the toilet?

I know you think I have the 'weird kids' and I know you didn't invite Cameron to your son's birthday party because he's the 'weird' kid.  I also know you invited every other boy in Cameron's class.  Do you not think your child over hears you when you talk about my son?  Do you not think that hurts Cameron?  Do you not think he wants to know why he can't come?  Maybe I should send him over to ask you.  But I won't, because I don't want his heart broken.  I won't tell him that he hasn't been invited because he's THAT kid in class, the one that no one knows what to do with.  But you know what?  If you take away the speech delay, and you take away the diet, and you add a few inches to his height, he's EXACTLY the same as your child.  You know, your child plays with my child in the playground.  They play football, they play tag, your child doesn't see Cameron as the 'weird kid' he sees him as Cameron.  Maybe you should learn from that.  If you just talk to me, you may find we're not so different at all, and if you talk to me, that diet isn't so scary when you find out that you don't actually have to make any extra effort as I'll do that for you, for him, so he can be treated like everyone else.  And you know what? His speech delay won't affect you either, because it's highly unlikely he'll even talk to you!  But nevermind, I will make up some excuse for your behaviour, maybe your child was only allowed to invite a certain amount of children, maybe your child forgot Cameron, there are so many boys afterall!  Maybe they are going to go and do something that Cameron doesn't like.  But he knows.  He's not stupid.

I know you think my children are 'babies'.  I heard you say it.  Yes, occasionally Cameron does go into class crying in a morning, and sometimes he will cry when I pick him up.  Yes, sometimes when I pick Cameron up from school he runs and hugs me so tight it's like he'll never see me again.  Yes, sometimes Katrina is screaming that she hates me, in a morning, and other mornings she's a perfect angel.  Yes, she too sometimes is so excited to see me, and will scream 'Mummy' as she comes out of her class, and run and give me a big hug.  My children show their emotions.  Cameron goes into school crying because he knows he's not going to see Mummy for a few days, while she's in hospital with Rowan.  Katrina screams my name and runs towards me and hugs me because for once I made it out of hospital on the day we were supposed to, and it's a huge shock.  Sometimes Katrina shouts she hates me, because she's not been able to go to her friends house, or is missing out on something, because of Rowan.  You see life is hard in our house. It's a rollercoaster of emotions, and situations and things move so fast that they often can't keep up.  Sometimes they need those quick tight hugs, to hold on.  Sometimes Cameron cries because he can't hold the tears in anymore.  My children have see more and been through more than yours have, and I hope ever will.

My children, all of them, know all about TPN and Hickman Lines, Gastrostomy tubes and Jejunostomy tubes.  I bet at least one of my child knows how to put the feeding tubes back in.  My children know what a line safety pack is, and what a blood sugar machine is.  They all know what those are.  They know what food contains gluten, and what doesn't.  They know all about growth hormone injections, and how to work various pumps.  My children have a kind of knowledge I wish they hadn't.  My 4 year old thinks a baby drinks a bottle through it's belly button.  That is normal for him, much in the same way your toddler thinks a bottle or breast is normal.  That doesn't mean they are 'weird kids' it just means they have a little more to deal with, and maybe they'd appreciate a touch of normality every now and again. 

I know you're dying to know what's 'wrong' with Rowan.  You stare at him in his wheelchair, you point and whisper, you stare at me, as I leave him in the wheelchair to help Ayden play on the equipment.  I am not a bad mother, he can move that chair himself when he wants to.  You look at me as he screams.  He is having a tantrum, just like every other 3 year old, only he has the added problem of being anxious, and you know what, he's not stupid either, he notices everyone staring at him.  I know you comment on the 'baby'.  And I'll forgive your ignorance.  I'll let you off the fact you KNOW how old he is if you REALLY think about it, because he was the 'baby who couldn't even eat properly' 2 years ago, remember that one? When all the children in the playground were taunting Katrina? I know you know, I saw you there, saying nothing, staring.

When we were kids we were taught to treat people how we want to be treated.  I'm guessing you forgot that.  I guess you also forgot that you shouldn't say anything if you can't say something nice.  I'm not even asking you to talk to me.  Infact I'd rather you didn't.  Or maybe I would talk to you, entertain your probing questions so at least when you gossip it's fact and not fiction, but it would be for my children's benefit.  Not yours or mine.  I also can't be doing with the two faced stuff.  Amazing how when you're on your own and not in a group you suddenly attempt the niceties.  What is it, an attention seeking behaviour in the playground?  Like to be the centre of the group.  Good for you.  If it makes you happy.

You see, amidst my panic attacks, and my tears, and the breakdowns I have while standing in that playground while you stare and whisper and point, I notice things too.  I overhear things too, when I turn up a little early and it's just you and I in the playground and you are on the phone.  Or when you go and have a quiet word with the teacher.  You see your life is not so perfect either is it?  And we're not so different afterall, just I learnt better manners.  I know you go to the same mental health place I do, I heard you on the phone, and I saw you trying to sneak into the toilet while I was waiting outside.  Unlike you, I don't judge people.  Rather than be embarrased about it, remember you're doing something about your problems.  Just like I am.  You see your child who is lashing out at you, is showing his emotions, just like my children show theirs.  And while you do your hair and your make up, and put on your expensive clothes and look down your nose at me, underneath it all you're just as anxious, and lost as I am in the world.

I'm not asking you to change your ways, I know that's too much to ask.  I'm just asking you to think twice about what you're doing and what you're saying, and who you are saying it infront of.  If you want to gossip, and make things up, knock yourself out.  But please don't do it around your children, or mine.  If it makes you feel a little bit more superior, and a little bit happier, then I'm pleased for you.  But just remember, one day it will come to bite you on the arse, it's called Karma.  I wouldn't wish my life on anyone.  It's not always a bed of Roses, I have been in situations, and seen things, that I would never wish on my worst enemy.  But at the same time, it's taught me to ignore people like you with their comments, it's taught me to appreciate the little things in life.  So while my children are giving me that hug, holding on to their world, I also appreciate it, that they are still able to show me affection, and they aren't scared to tell their Mummy they love her infront of everyone.  I hope you do end up with your perfect life, I really do.  I don't want a perfect life, I don't want perfect children.  I want MY life, with MY children.  Because that is exactly how my life is supposed to be.  In our house, we're all weird, in our house, we all fit, in our house, everyone is weird, and everyone fits. 

Unlike in your life, where my children don't 'fit', in my life, everyone fits, because there is no such thing as a mould, or a slot where they should be.  You'd fit too, if you wanted to.  One day those friends of yours will realise, that gossip you heard at Campbell House, meant that you were at Campbell House too.  Maybe they already have, and gossip about you and your children behind your back, infact they probably do.  But you won't see me joining them, as my children are far too important to me.  I used to like being the centre of attention too, I liked having lots of friends, but I learnt the hard way that 99% of those 'friends' are just using you for entertainment and when you really truely need a friend, you don't really have any.  I hope you never find that out, or maybe one day it happens to you, and you will remember me in that playground, and think twice.  Maybe there will be a moment, when I am the one that offers you that tissue as you meltdown while waiting to see someone at Campbell House.  Maybe there won't, but the difference between you and I, is that I would offer you that tissue, I would return your child if s/he runs out the school gates, I would pick up that bookbag if you dropped it while juggling children and bags and lunchboxes.  I would never alienate one of your children because of something that might mean I have to put a little bit of an effort into.  And I would never gossip about you, or about the things I overheard.  I was once where you are now, and I got hurt, very very hurt.  And things never did get better, not yet anyway.  So while you're laughing and talking and staring at my expense, all I feel for you is pity.

I hope, that whatever you say or do in your life, makes you and your children happy.  And I hope you never have to go through the things that I have been through.  While I have learnt life's lessons the hard way, I have also learnt the beauty of people and situations that you never will.  I have met genuine people who care about my family, not people who use me for entertainment.  I know people who would be there for me in a crisis.  And while my friendship ring may be absolutely tiny compared to yours, I learnt what a friendship is really about.  Trust, Honesty, Openness, Acceptance.  These are things my children have learnt already.

Everyone is completely different, yet the same. 

So, I will no doubt see you in playground this week, whispering and looking, pointing and giggling.  And I will carry on, giving my children hugs, wearing my trainers, with my hoody and my hair scraped back, thanking someone somewhere, that we're not in your shoes, and feeling lucky, and appreciating the moment.

I hope one day, you see someone else like yourself, and remember.

From, your source of entertainment.

Claire

Letting go, just a tiny bit, trying to be normal.

Last weekend, when Lee came back from being away, we took the children out for dinner.  I can't remember the last time we all went out for dinner to a proper restaurant.  It was quite a few months ago that's for sure.  We took them to a chinese buffet.  We know what the boys can/can't eat, we have investigated previously, and they love it.  It was so nice to have a 'normal' family dinner out.  No drama, no meltdowns, just smiles all round.  The stress of getting everyone ready was definitely worth it!

                                                               Ayden, with Sushi!

We are about to embark on what is quite possibly going to be the most productive, and most important week of the year, and it's difficult to know how to approach the week.  4 days of the week will be spent at Great Ormond Street Hospital with various children.

Tomorrow, Monday, we are heading to GOSH (Great Ormond Street Hospital) for an appointment with the Gastroenterologist with Ayden and Cameron.  Normally Katrina comes with us and has the day off of school, but she is getting older now, and spending a day at the hospital really isn't something she wants to do.  The problem with this is that the appointment is not until 420pm.  So a decision had to be made.  Katrina, being 9, knows what she does and doesn't want to do, and we had two options.  Do I enforce my parental right to tell her what to do, and deal with a stroppy, annoyed, bored, tired, more than likely screaming 9 year old, while stressing about TPN lines, and connecting TPN and feed, and making sure we don't lose a child.  OK, so it doesn't sound particularly appealing, or, do I bite the bullet and ask someone to help.  Asking people to help me out is not something that comes naturally, and I hate it.  I chose to have 4 children, I should be able to look after them myself without help from anyone.  I know what people are going to say, I didn't choose to have children with additional needs and I didn't chose to spend half my life in a hospital.  It's ok to ask for help, it's not admitting failure.  I have heard it all before, and yet, it doesn't change how I feel.  Katrina also didn't ask to have 3 brothers who have additional needs, nor did she sign up for spending hours and hours at a hospital.  So I bit the bullet, and I text one of her friend's parents.  It felt horrible.  I had to ask someone to help me, with Katrina.  I did it, and she said yes.  So, I will take Katrina to school tomorrow, and I won't see her again until after school on Tuesday.  She is having her first EVER sleep over at a school friends house.  I know she will have a whale of a time.  While thinking about the fact my little girl is growing up (buying her shoes from the adult section was a bit uncomfortable!) I also have to remember that she is a lot more grown up than most children due to the situation she has been thrown into.  It is difficult sometimes to know where the balance between being a 9 year old girl, and being a 9 year old girl who has seen the things she has seen, who knows more about drainage bags and feed pumps and TPN sets than 99% of other 9 year olds.  So, she is having a sleep over.  I know she is looking forward to it, and I know she will be fine, and I also have thought about how important it is for her to go to her friends on Monday.  So she can see what other 9 year olds do, and how other families work.  It is important for her to have some time to be Katrina, and not 'Rowan's sister'.  She does do this quite frequently, she goes to young carers (but she is there because of Rowan and knows this is why) and she goes to Brownies.  Brownies is important for her because it's a 'normal' activity, it's a group of girls, where at home it's mainly boys.  She gets to be Katrina, her brothers can NEVER go to brownies, it will always be her thing.  Today she has gone to Warwick Castle with Brownies, and I am so grateful to Brown Owl, she lives in the same street as us, and ferries Katrina wherever she needs to go.  So Katrina goes on ALL of the trips that are offered to her.  Going to her friends for a sleep over is just another step of 'normal' for her.

Speaking of 'normal' activites, Cameron went to his second ever birthday party last weekend.  It was the first fancy dress party we have ever done, and I have to say I believe it was a success.  It was a 'Western' Party, so cowboy outfit it was.  It sounded like he had an amazing time.  He certainly looked good, and surprisingly, being dressed as a cowboy really suited Cameron!  At the age of nearly 7, I have begun to realise that he too needs to start taking a little bit of responsibility for his own health.  So, for the last 4 years or so, we have been conditioning brainwashing teaching him what he can and can't eat and why.  It hasn't been until recently that I have realised how much Cameron's diet controls his life.  We have to be careful where we eat, what we eat, it controls where we can go on a day trip, or if we can go on a day trip at all, and as we have 3 of them, we just kind of fell into a comfort zone.  Now that Cameron is almost 7 we are having to move out of that comfort zone.  I am having to let go a little bit.  I have to trust him.  So, I sent him to the party, with his own food, with strict instructions to ONLY eat what is in his lunchbox.  Which, as far as I am aware, he did.  And to top it, he sorted through his party bag, what he could have, and what he couldn't and what he needed to ask me about.  The next stage is to let him go to a friends to play.  Cameron is itching to go to his friends houses to play.  We have always said no.  Not only do I not like talking to other parents, I don't like having to almost tell them how to look after my child.  I don't really trust other people with my children.  Especially when feeding him the wrong thing, even just a tiny bit, can make him so poorly.  So for these reasons I have either just put it off, or said straight no.  However, he is 7, he is showing me he can make good choices, and can look after himself a little bit.  So, the next step is to let him go to his friends houses.

And so, while trying to get my children to have little bits of 'normality' there is always the constant at home which is far away from normal.  I don't know why, but I have a real issue with admitting that this is how we are as a family.  I want to be 'normal' I want to appear 'normal'.  I don't want to attract attention, I don't like having to ask people for help, I don't like having to rely on benefits from the government for my children, I don't like being different, and I don't like being talking about, or stared at, or pointed to.  And more than that, I don't like my children being treated differently, pointed to, or stared at.  They have enough in their lives.  I want to be normal, and I am finding it very difficult to come to terms with the fact that our normal and your normal are so very different.  Our occupational therapist came out to see us this week.  And we should be getting a banister for Rowan on our stairs, that is at his height, so that he can learn to go up and down the stairs by himself.  We have bought a set of step ladders so that he can reach the sink to wash his hands and brush his teeth.  The OT is getting him a chair so that he can sit better at the table with his brothers and sister (ok she called it a highchair which I feel needs to be changed, as highchairs are for babies!).  Everyone else is also hell bent on us looking and functioning like a normal family.  We aren't normal, and I can say that, but I don't feel that.

So back to this coming week.  Monday we are at GOSH to see the Gastroenterologist with Cameron and Ayden.  While I am sure that this appointment will just be a routine check and all will be fine, and possibly another short course of steroids for Cameron, you never can be sure.  This will be the first appointment at GOSH for just Cameron and Ayden.  It always used to have Rowan thrown in there too, but Rowan now has a different gastroenterologist to Cameron and Ayden.  Rowan will be physically with us, and no doubt the consultant will comment on how AMAZING he looks, and grin the whole way through the appointment knowing that he saved Rowan (and rightly so!).  However the focus will be on Cameron and Ayden.  You never can be sure that out of nowhere they will land you with another test they want to do, or repeat scopes, or try xyz.  How about we refer to so and so and see what they think.  Part of me wants this to be an uneventful, boring, 'yes everything is fine, but here is your prescription, please now wait over an hour at pharmacy for your little prednisolone tablets' and part of me thinks, now that Rowan is stable and the focus is off of him, that maybe we should be investigating a bit more, moving forward.  Maybe we ARE forward, and that's fine, and maybe I can be told that tomorrow.  Over the years of dealing with constant medical problems, I have learnt while it's good to have expectations, don't get hung up on them, because they aren't always met.  Set the bar low, and then you aren't disappointed.  Expect the unexpected.  I don't have a 'mission' for this appointment, unlike when I go for appointments for Rowan.  So, instead, I am 'expecting' to have a fairly uneventful day with my boys (Katrina is at her friends remember) in London, maybe going somewhere nice for lunch, maybe making a picnic lunch and having it at the park behind GOSH, while letting the boys play in the park.

Once that is over, we have a whole 24 hours at home, before we are back to GOSH again.  For Rowan.  Rowan is being admitted to GOSH, Weds-Fri.  He will be under the Endocrine Team, which, for those who know the politics of GOSH, will know this fills me with much more confidence than when we are admitted under the Gastro team.  So, what is he going for?  Basically we have had a few problems with Rowan's blood sugar levels when he is coming off of his TPN.  We manage them ok, and it's not hugely dangerous, but it's also not ideal.  And while they remain manageable, the Endocrine team need to make sure there isn't another problem arising that we haven't accounted for or possibly predicted.  So, he is going in for what is known in the endocrine world as a 'profile and fast'.  Basically, they will test Rowan's blood sugars every hour for 24 hours.  Then, once that is over, they will 'fast' him.  So, no breakfast (which is key to keeping up his blood sugars as it's loaded with carbohydrates, a trick we learnt quite quickly with Rowan), no juice, no water, no milk feed, no tpn, no nothing.  Rowan NEVER goes without anything.  And we see how long he manages before his blood sugars drop.  In an ideal world, they won't drop and all will be well.  In reality, without the carbs his body will be expecting, his blood sugar will drop.  It's a complicated process to those who have no idea what I am talking about, but the aim is to make sure that Rowan stays as safe as possible, and we spot any new problems as quickly as possible and start to treat them.  Blood sugar levels are very important, blood sugar levels that are too low are dangerous, as are those that are too high.  The first year of Rowan's life no one checked his blood sugar level.  Never.  In hindsight it was blatantly obvious that, with the nutritional state he was in (or not in!) blood sugars should have been checked.  It wasn't until he was 14 months old that I noticed he had a problem.  While being reassured that a blood sugar of 2.2 while on normal saline wasn't great but it would be fixed by 5% dextrose and was quite normal, I knew no better, and was kept in the dark about blood sugars.  It wasn't until we were admitted to GOSH on an emergency visit, that I was told that 2.2 on saline was NOT ok.  We walked through the doors, with a nurse from our local hospital.  He was on 10% dextrose, and they kept him on that all the way there in the ambulance.  We arrived on the ward, and his blood sugar was checked, and it was 2.1.  The nurse RAN and started putting some gel in Rowan's mouth.  I now know that is called hypostop, and it's a 'quick fix' for low blood sugars, but while it doesn't contain carbohydrates (which are used to maintain the blood sugar) he was yoyo-ing.  So he'd go from 2.1, up to 6.4, back down to 2.3 within an hour.  As soon as we were able to feed him his milk again he was ok.  No one mentioned sugars again.

On another trip to GOSH, it was noticed that Rowan was VERY sleepy.  Something most people but down to him being so underweight and so tiny, that he had no energy.  A nurse did a blood sugar on Rowan, just to make sure he was ok, and it was 1.9 (a normal range is 4-7, although Rowan is allowed to go between 3.5 and 10 before he requires intervention) that nurse got Rowan some IV fluids.  From there we were advised to 'spot check' Rowan's blood sugars and nothing else was mentioned.  It was sent in a letter to our local hospital and we were supplied with a blood glucose monitoring machine (the same as they use for diabetics) and asked to check his blood sugars every 4 hours, and for the first week note them on a chart.  I did this, and sent it to the hospital (at this point, I still was unsure what was 'ok' and what wasn't)  the sugars ranged from 1.7 up to 3.8.  I was told it was ok, as he was so underweight, that was to be expected.  I accepted that as fine.  Why wouldn't I?  Then we were admitted to GOSH for our long stay (the 8 month one) and people all of a sudden started doing hourly blood sugars.  Yes, my little boy, 9lb 12oz at 18 months old, had a blood sugar checked every hour of every day for 8 months.  And the results were shocking.  As soon as Rowan had his central line put it, and TPN was started, it was noted very quickly that he needs a LOT of sugar.  He actually has the equivalent of 22 1/2% dextrose in his TPN.  To put that into perspective, you can not run anything higher that 10% dextrose through a cannula (the needly they put in the back of your hand in hospital if you are dehydrated).  Most people only need saline, or a little bit of sugar, 5%.  Rowan has 22 1/2% dextrose EVERY day.  This now means that he is completely dependant on his central line.  If his Hickman line is broken, or we aren't allowed to use it, our options are VERY limited.  We have a plan for if this happens.  (I like to say if, but in reality it's when, I know we are extremely lucky that in the 18 months Rowan has had a central line we have NEVER had one break or block).  If we just put a cannula in Rowan, and run 10% dextrose, his blood sugars won't take long to crash.  There are two main things that can happen with blood sugars that are too low, one is a coma, the other is brain damage.  So, Rowan's emergency plan consists of another kind of line that would be extremely temporary.  We also don't know if the low blood sugars Rowan had for the first 2 years of his life, have actually caused some brain damange.  At the moment all seems to be Okish but you never know.  So, because of this with Rowan, we just have to keep an eye on him.

So the stay sounds fairly simple and straight forward doesn't it?  And that bit does.  It's everything else that goes with it.  We will get a Gastro review, and I get to ask any gastro related questions.  This is so that I don't have to go back in a couple of weeks for clinic, as we are there anyway while not kill two birds with one stone.  And that makes sense until you factor in that EVERYONE has the same idea.  So physio will come and do a review, and gastro, the endocrine tests will be going on, we also will meet the pain team for the first time, we will see CNS nurses, and I know that a metabolic review and a genetic review is also being requested, and no doubt they will also think 'why not kill two birds with one stone'.  So, the 3 days that we are at GOSH, I am thinking of operating a ticket system, you know, like you have in clarks, everyone takes a ticket and waits for their number to be called?  It will be a full on 3 days, if you factor in a hungry, thirsty, grumpy 3 year old as well.  I have 3 'missions' for this hospital stay though.  One is to actually get out on Friday.  Two is to get some proper advice about Rowan's physio exercises, and ask lots of questions and get some answers so I know what I am doing, and also get a leg to stand on when I am arguing with other professionals.  And the third, and most important, is to get something for Rowan's leg pains (which appear to be progressing to back pain as well now). 

So, it will be a productive and full on 3 days.  In the middle of all this I have my mental health struggles.  I always struggle with hospital stays.  Usually I am slightly better at GOSH, because we are on our usual ward, with usual nurses, I know where everything is, I know how to get what I want, or where to get it, I trust the nurses enough to leave Rowan.  It's my comfort zone.  It had to be, I spent 8 months there!!  These 3 days, we are NOT staying on that ward.  It's on another ward.  And while I know it and have been there for day-case things, I am not looking forward to going.  I don't know the nurses, they don't know me, they don't know Rowan.  I have little ways to cope with hospital stays that our 'normal' ward know, if Mum is in a foul mood, keep the door shut and leave her alone, or bring coffee and toast.  I suppose I have been spoilt.  So I am going to have to talk to people I don't know (while trying to figure out if they are real or not) and ask for help, and things I need (which I hate).  And to top it, I was told last week that I may not (ok probably will not) get a cubicle.  The ward only has 2 cubicles.  And if there are 2 other children that are possibly maybe infected, they will get those cubicles (understandably).  Usually we have a cubicle because you are not allowed to connect TPN in an open space with other children running around.  However, this ward has a room now where you can connect the TPN, enabling them to put TPN patients in a bay.  (A room consisting of more than one child and parent).  The bays on this ward have 6 beds in, with 6 chairs for parents.  5 other screaming children, 5 other parents (which may be Dad's as well as Mum's) 5 other families, which often means a ton of visitors, lots of traffic, lots of people looking and just generally talking.  It will be loud and hot, and busy, I will have no privacy, no personal space, nowhere I can just shut the door if it's all too much.  No where I can just sit and cry if I need to.  I don't trust the nurses because I don't know them.  I don't know when these doctors are coming, which days, which order, and we all know sod's law says that the minute I need a break and a caffeine fix the doctors will arrive.  It's not the 4 hours I have been waiting for them, it's the 10 minutes when I nip to get a coffee.  Rowan will be SCREAMING as he will be hungry, and thirsty and hot, so that's 5 other parents tutting, and wishing you'd shut your child up. 

Can you see why I'm dreading it?  Is it a situation you'd choose to be in?  So yes, I have spoken to my mental health team about getting some diazepam.  Losing my temper is not pretty, I have a sharp tongue and I am unable to control my language when I lose it.  I lash out, and can be downright nasty.  It's not a situation I want to be in, for me, or for anyone else.  So I have to think about these things, plan ahead, and think it through.  It's going to be a rough 3 days in so many ways.  But it's also necessary for Rowan.  Rowan's needs come first always, so while I am stressing and having panic attacks and biting my lip trying to breathe my way through the day, I have to advocate for Rowan, and get him what he deserves.  This is why I have 'missions' if I can, so that it sort of gives me something to focus on.  Sometimes it works, sometimes it doesn't.  Fingers crossed Rowan gets a cubicle!

No doubt I will blog again next weekend about the weeks events.  See you on the other side!