Latest addition to the madhouse......

The latest addition to the madhouse, is definitely not what you'd expect.  The reaction to her, I didn't quite expect either.  It arrived a couple of weeks ago, and came complete with an 'adoption' certificate.  We had no idea what to call 'it' and, infact, we weren't even sure if it was a boy or a girl.  So we decided to ask the children.  Cameron and Katrina decided they would just pick names that they liked, and shout them out for the rest of us to comment upon.  Ayden sat quietly, looking at 'it'.  Then he declares 'It's a girl'......so I looked at him and said 'Ok, it's a girl'.....and he said 'No, look, it has a bottom.....but no willy, because THIS is a tail, I have a bottom and a willy because I am a boy.....no willy means a girl'.  I wasn't quite sure to address that, other than that clearly he was right.  I found it rather fascinating that neither Katrina or Cameron were even bothered, and clearly saw 'it' as an 'it' where Ayden saw 'it' as a.......well.......personality.

No one could still think of a name for our new addition however.  We searched and searched and searched.  It was harder to find a name for our new addition than I would have thought.  So.....what is this 'it' we are talking about??  We would like to introduce you, to our latest addition........

DOMINO

Rowan has become very very attached to Domino.  We had a few settling in problems, and it took a little while for us to work out where Domino will be sleeping, and apparentl what she likes eating, but both Ayden and Rowan have decided that Domino likes McDonald's chips with curry sauce, along with diet coke to wash it down.

Domino's first outing was a big outing.  Domino had to come with us to the hospital.  Rowan hates the hospital.  So we decided that Domino deserved her first day out, and Rowan could show Domino all the things we have to do at the hospital, this made things a lot better for Rowan!!

So here are the pictures of Domino's trip to the hospital.

First we had to sign in, and then we have to wait to be called.

While we wait, there are toys we can play with, Rowan decided that Domino needed to try some new foods, McDonald's chips just aren't good for you.

When the lady with the blue T Shirt on calls your name you have to go into a special room, where they weigh you and measure you to see how big you are growing!!  Domino didn't like the scales, she kept sliding off, oops.

Once that's all done, we have to wait for the doctor to be ready.  Rowan's doctor was a big grumpy and wouldn't let us take a picture of Domino with the Dr.

After the doctor's appointment, we have to walk through our town to go back to get the bus.  In the town we live in, there is a really nice art project.  It's called 'Wild In Art'.  Last year, it was the 'pride of Northampton' so all the schools, and lots of other organisations too were delivered a 'lion'....they were plain white model lions.  Each school then decorated them, then they were displayed throughout the town.  They were absolutely gorgeous.  Some adult artists made some too, and there were lots of different ones. Outside our main shopping centre was a Lion that looked just like Alan Carr!  With the goofy teeth, and the glasses, Alan Carr came from Northampton!  It was very very funny!  So this year, because the project was so successful, it has been expanded to cover all kinds of different animals, with all kinds of different designs.  So Rowan and Domino went through town seeing how many different animals we could find, what they looked like, and then posing for photographs.  It gives a little bit of interest to our town!  And they are hiding all over the place!!

                                         

  A Rhino, depicting the Balloon Festival that is in Northampton every year.

Domino couldn't climb onto this one, there was nothing to hold on it, and it was so tall!

  This Gorilla sits in the middle of town, Rowan thinks he looks a bit like a security guard, but the label says he's a pilot.

Rowan helped Domino climb onto the back of this Lion for a picture.

                             Oh that is a lot better, a tiny gorrila, much easier to climb onto!

This Hippo is a giant blackboard!  Everyone writes on it with the chalk out of the pink cups!  Rowan and Domino made their mark too :o)

This is Rowan's favourite animal in town.  We decided though that the Rhino needed more Spots.  Lots of animal prints all in one.

We thought we lost Domino, but no, she was sunbathing on the pink flower Rhino, phew.

It had been a busy trip to town and both Domino and Rowan were very tired!

Goodnight Domino and Rowan, sweet dreams!

I would just like to say a big Thank You to the guys and girls at Post Pals, for running this project, the Dotty Project, and Thank You to Dotty for allowing us to adopt one of her Littermates.  We are looking after her well and she is enjoying many days out, she is a valuable member of the family now.  We have been to GOSH, we have been to the park, Domino comes everywhere with us now.  Thank you.  She gives us another focus when we are out and about, and has allowed Rowan to be much more interactive, although without words still.

Days 4 and 5.....

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

Day 4

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

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

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

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

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

And this is a button......

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

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

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

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

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

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

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

Day 5.....hometime...

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.