Friday, 15 June 2012

Happy heart day!

Wow, it has been 2 years since we handed over our baby to be 'fixed'.  It has flown by.  To look at her now, you would never know.  Well, unless she shows you her chest and tummy!  The scars are just faded lines now though.  Even her little angel kiss drain scars are white silvery lines now. 

I never get sad about what she has been through anymore.  I am just so proud of her.  I often trace those tiny scars with my finger and smile.  She has overcome so much and has left all that pain behind.  I wish I could say it was that easy for me, the pain followed me around like a big black balloon tied to my wrist.  Every time I thought I had severed the string something would trigger a memory and there it was again, constantly bobbing over my head.  Who would have known that all I had to do was take up my time with something else???  I have gone back to work and it is the best therapy. I no longer sit wondering 'what if......'.  I am pro active and enjoy what I do.  I also get the best of both worlds as both Josh and Georgia are so happy to see me!

Obviously Georgia's heart is still 'poorly', but it always will be to a certain extent.  All heart parents know that their children will never be completely 'fixed'.  Her heart is doing well though, we don't need to go back for a check up until November, which is the longest amount of time we have gone between appointments!  We do still need to go for her respiratory appointments but even that seems to be great at the moment. Since getting a trampoline and teaching Georgia how to bounce, her breathing is great.  I hope I haven't spoken to soon!

So as you can see, I have finally accepted the lung disease.  I know I can't change it.  We just need to manage it for her and hope that we are doing it well.  It wont be too long and she can take charge of her physio (with us overseeing, obviously) which will be easier.

I would never have imagined that one of our children would be born with so many problems but I also would never have imagined that she would be so strong. 

Happy heart day my beautiful girl. x x

Monday, 14 May 2012

Beautiful inside and out

Well it has been a long old time since I wrote an update on the 'Georgia Story'.  Unfortunately, sometimes life just gets in the way!

To catch you all up a bit........................We came home from Southampton Hospital after her tonsils and adenoids surgery to a very happy Josh.  He was so pleased to see us, as we were him.  We had figured we would be in the Hospital a lot longer than we actually were.  Georgia was over the moon to be back in her own bed at night and to have her colouring hand free of needles.

The happiness didn't last too long.  Josh came down with a really bad case of Hand, Foot and Mouth.  It started with just a few little spots on his fingers and gradually spread all over his palms, all on his feet and up the back of his legs too.  The worst was in his mouth.  Bless him, he does love his food and he could hardly open his mouth for the amount of ulcers he had.

Georgia contracted it 2 days later.  After seeing how bad Josh's mouth had got I was petrified that Georgia would have it just as bad, that on top of her tonsils pain was going to be excruciating.  Fortunately, she got one little lump on her finger and that was it.  My little warrior!  I guess the IV's had kept her safe.

2 weeks later came the chicken pox.  Seriously!  At this point Rob and I had not slept in weeks.  Josh and Georgia had chicken pox at the same time.  Both completely covered.  They were miserable, we were miserable.  I suppose all you people out there that don't have children cannot completely appreciate how it feels to be dead tired.  We were all like zombies.  I am surprised people didn't run and hide when they saw us coming.

So now to the good bit.  They got better.  Georgia started smiling again, Josh started driving me insane.  All was right in the world!

Since then we have had a scare with a cough swab but it turned out to be nothing.  I have taken Georgia to our local hospital a couple of times when she has been off colour but those are our usual midnight adventures.

To be completely honest, after all the drama of those few months, I was a bit worse for wear.  I looked in the mirror one day and didn't even recognise myself anymore.  I looked like I was defeated.  Anyone who knows me will tell you that I do not get defeated easily.  I suddenly just couldn't function anymore, and then there he was, my Rob.  He took over and just let me recover.  He is great at that.

One day we had a visit from Georgia's community nurse.  She, and the team from Southampton, had become worried about me.  They had all got together and contacted a charity for a holiday for us.  She said she wanted to make a wish come true for us. 

A few weeks later and we were contacted by the charity (not sure if I can say who it was) and a lovely lady called Kate who was to arrange it all for us.

We went to Haven in Devon for a week.  The caravan was lovely, the weather was OK (rained a bit) and the site facilities were amazing.  Best part of the whole holiday was seeing both of our children leaving behind all the pain and just being free from it.  We could forget those awful times.  Georgia can swim!  No armbands, she will not tolerate those.  She was off up the slides on her own, she wont tolerate hand holding. 

Best thing about the holiday for Josh was his goggles.  They stayed on at all times!

I am incredibly proud of both our children, and of us too.  If I had known how hard this journey would be then I may have made a different choice sitting in that room at the very start.  Now I know that no matter how hard it has been, it is totally worth it.  I could not live without Josh, Georgia or Rob in my life.  We were destined to be tested to the limit, all 4 of us.  I think we have coped pretty damn well.

So I will leave you today with a picture of our little fish.  She is beautiful, headstrong, intelligent and utterly bewitching to everyone she meets..................Our Georgia smiles.

Saturday, 14 January 2012

Home at last?????

I have realised that I am slightly neurotic regarding Georgia's lung disease.  I mean, it's getting quite unhealthy, not just for me but her as well.

I freak out about people kissing her.  I actually hold my breath when people get too close.  All the possible germs that they could be breathing all over her.  I have found that I am keeping my distance from her a bit too. 

We have all been so ill over the last few months, I am petrified of giving her anything more to battle.

I know I am going to have to get over myself.  It's just not good for her to be kept away from life in general. 

It's really hard though.  I see other people interacting with their children with no worries about transferring germs and I am slightly envious of them. 

I am writing about it to try and talk myself into stop being so protective, for Georgia's sake.

The other thing I have noticed recently is a bit worrying.  My hair is falling out.  I mean, I have really thick hair so I do usually shed more than the average person but this is getting bad.  Every time I brush my hair, the brush is thick with it.  I was not really worrying about it until I had dream that I was completely bald!  Perhaps it was my subconscious telling me to worry.  To be honest, I could probably do with losing a bit of hair, saves on hairdresser bills.  Maybe I should just start investing in some really funky hats.

Anyway, back to Southampton hospital and what happened post surgery with Georgia.

The second day after surgery, the ENT doctor and respiratory consultant came in to see us.  They decided that we could go home!

We were amazed, I had convinced myself we would be there for the full 2 weeks IV's. 

Rob and I wouldn't believe it until we had got out of the hospital with her though. 

At 2pm, the nurse came and gave Georgia her last lot of IV's and took out the cannula.  After the nurse had taken it out she asked Georgia if that was better.  Georgia replied one word that summed it up completely.  Happy.

So we packed up the room in 5 mins, as fast as we possibly could.  I think we still expected someone to come in and stop us leaving.

As we walked out of the ward they were having a carol service in the reception room for all the poorly children so we stopped to listen for a minute.  It was so lovely, it felt like christmas could finally start for us. 

It was all going so well.  We all bundled into the freezing cold icy car.  I put the heating on full blast to warm it up, then turned the ignition.  The car wouldn't start.  Great.

Wednesday, 11 January 2012

Recovery in pain

One of the nurses from G ward came and told us that Georgia was awake and in recovery.  We made our way back down to the theatre waiting room.

Even before walking in the door I could hear her.  It was that breath catching scream she does.  I think we were meant to wait until they came to take us to her but I didn't care.  I ran into the recovery room as fast as I could. 

Georgia was in the arms of a nurse when I went in.  She was fighting the nurse to get out of her grip to get to us.  When I picked her up she just looked at me as if to say 'where the hell have you been?'  As if I had been off enjoying myself!

They took us all up to PICU just to keep an eye on Georgia for a couple of hours as she has a habit of getting so worked up that her lungs collapse.  I don't think PICU were too impressed to have this screaming little child come in and interrupt their peaceful ward but after a bit of oramorph Georgia settled in my arms.  One of the nurses went and got the TV and put Peppa Pig on for her, then she got comfortable and had a little sleep. 

PICU monitored her for 2 hours.  All of the results showed that she was coping so we could go back to the ward.  We did get a little PICU teddy for her though, to go with the others.  She has quite the collection now!

On returning to the ward, Rob gave her a bottle of milk.  She coped with that quite well but then that would have been the oramorph for the pain and the fact she still had not fully coming out of the anaesthetic.  I don't know if you have ever been under anaesthetic but it makes you really thirsty afterwards so I would imagine that was what prompted her to drink, that and the fact she sees drinking a bottle as comfort.

She finally went to sleep and Rob disappeared off to stay in the charity house opposite the hospital.  He was going to sleep in the car but he had done that the night before and said it was bloody freezing, plus I had parked the car right next to the helipad.  Whoops! 

She slept until 3.30am then I expect her throat started to hurt and she had a bit of a cry.  I asked if she could have some more pain relief but the doctor had not written her up for any so I had to wait for ward rounds.  We waited until 10am before she could get anymore pain meds.  By this time she was beside herself, not only was she in pain, they were still doing IV antibiotics too. 

Luck for me, there was a 3rd year student nurse working that day called Rowan.  She spent so much time with us trying to keep Georgia happy.  I wish she had been working the day we left so I could have thanked her.  I couldn't have coped without her.

The consultant came in and told us that they wanted to keep Georgia in for a further 2 weeks IV antibiotics.  I was so devastated.  I just sat there and cried.  It's so frustrating, I was so used to being at home and doing meds and bottles and meals myself.  Having to wait for these things to be done for us was annoying.  Also, as we were right at the end of the corridor in a room on our own they forgot to get Georgia food.  We only got 1 meal while we were there.  Rob ended up going to buy food elsewhere for her.

Eventually we got some pain meds for her and she settled for a bit. 

It sounds awful but being in one room with Georgia in pain and screaming really takes its toll on you.  We both sat outside her room while she slept.  I managed to relax a little but you are always on edge waiting to see how she is when she wakes up.  Unless you have been through this, I don't think you would ever understand how it feels.  I cannot fully explain all the emotions either.

After watching over 100 episodes of Peppa pig on my laptop, Georgia finally went to sleep that night.  I sat there while she slept, praying they would let us go home. 

More than anything I just wanted to see Josh.

Wednesday, 4 January 2012

Back to the start

It's been ages since my last post.  We have been super busy so I have just not had a chance. 

I guess I better bring you up to date!

So, psudomonas had been found on a cough swab and we had been given a 2 week course of Ciprofloxacin to try and beat it. 

When the 2 weeks was up, a community nurse from our local hospital came to get a cough swab.  As you can imagine this was one of the most important swabs she has ever had, therefore we were very frustrated when, after an hour, the nurse declared that it was impossible to get the swab and that we should try ourselves.  Then she left.  Rob and I used both swabs we had been left, neither got to the back of her throat.  The most they would find on them would be leftover wotsits.  Why is it that I still just trust these people to know what they are doing?  I just assumed that it was fine for me to do the swab.  Not so.  We (Rob and I) are her safe place.  If we start attacking her with medical instruments she will never trust us again! 

I got a phone call from her wonderful PCD nurse in Southampton.  The respiratory team and ENT had decided now was a perfect time to take Georgia's tonsils out.  There was a CF (cystic fibrosis) nurse on the Island who would do a cough swab for us.  She would take the swab back to Southampton with her so they could find out if the dreaded Psuedo was still there.  If it was then we would need to stay in the hospital after surgery for 2 weeks IV antibiotics.  That doesn't sound too bad does it??  Well, it is.

I was due to take Georgia over to Southampton on the Monday morning so she could have 24 hours IV's before surgery but she was a bit under the weather so we went in on the Sunday instead for 48 hours. 

As wonderful as the surgeons, nurses and doctors are, I hate that hospital.  Just walking through the doors not knowing when you will be taking her home is so frightening. 

We were on G level surgery ward.  Georgia was given her own room to protect her from infection and also as the previous swab had contained psuedo, its not the best thing to spread around! 

First thing was to canulate her.  I have learnt so many things from this experience.  The main thing being, when they canulate her, get them to put it in anywhere but the hand she uses to colour with! 

As you would imagine, she was very unimpressed at being stuck with a needle.  She was even more unimpressed that the thing stayed in her hand.  Then, she was furious with me for putting a sock on her hand to stop her pulling it off.  

I thought that might be the hardest part of the first day over.  I didn't even consider the antibiotics.  I also didn't realise that they would have to be given every 8 hours, meaning that she was always going to have a middle of the night IV.

As the nurse took the sock off her hand I could see Georgia's little mind thinking 'thank god you are taking this thing out'.  When the first part of the IV was being put in I had to hold her down.  If I hadn't I am sure that poor nurse may have had antibiotics inserted into her eye.  Georgia was beyond furious.  It took me an hour to calm her down.

Soon we were both fed up of not being able to leave the room.  If I needed the toilet I had to put Georgia in her cot, then run across the hall, go as quick as I could.  I could still hear her screaming the whole time.  It's so stressful being in hospital, and this was before surgery!!!!

2 days later her surgery was planned.  We still had no idea if she needed to stay in for 2 week IV's but the swab had not shown anything.  It was now the decision of the respiratory team and ENT.

Georgia was so good.  She had not eaten or drunk anything since the previous evening, but didn't moan about it once.  She only cried when they did her IV's. 

Rob and I dressed her in her little surgical gown and took her to the surgery waiting room.  She was totally oblivious to what was going on and just sat playing while we waited.  I know her heart surgery was a massive operation compared to this but the memories it brought back were terrifying.  I went with her down to surgery.  I had to hold her while they gave her the gas to put her under.  She fought it so much that the nurse said afterwards that some full grown men cannot resist the gas for that long!  I walked away feeling broken.  I felt like I had put her through this pain.  Her heart surgery had to be done, but this could have waited.  There was no going back now though.

We went back to the ward and waited for news.

Tuesday, 22 November 2011


When we bought our house it was for life.  I had honestly thought that we would be there forever.  So, being in the position we are in now is frustrating.

Losing our house was devastating.  It was our home, our investment for our children.  Now its all gone.

Walking around the house the day we were repossessed was awful.  It was a shell of the house we loved, empty.  I felt completely defeated.

I relived memories.  Having flashbacks in every room as I said goodbye.  Joshua's bedroom; goodnight stories and songs to send him to sleep.  Georgia's bedroom; sitting up for hours, terrified.  The kitchen; Rob and I trying to deal with the diagnosis.  The dining room; Georgia's first smile, Joshua's first steps.  Finally the living room.  The only vision I had in that room is one I will never be able to get rid of.  Georgia lying on the floor, blue, not breathing. 

As I walked away from the house I had hoped I could leave that memory behind.  Unfortunately it is still there as if it was yesterday.

So, fast forward eight months and here we are, in a rented house.  It is freezing cold and no good for Georgia.  We cant do anything about it. 

I am now looking for somewhere else to live.  Is this how it will be now?  Constantly skipping from one house to the next?  I would say we miss the stability of having our own home, but it was just as unstable as this one.  I suppose I miss feeling stable, even though we actually were not.

I have been to see two houses so far.  They were both awful.  Both full of mould and nicotine stains on the walls.  I don't want either of my children living somewhere like that, especially Georgia.  I guess I am just going to have to let her health be affected by where we live for a while.  The council don't see us as a priority.

No mortgage for us either for 6 years.  Bloody bankruptcy.  Although, we would never be able to get a deposit anyway.

So for people like us we have no option but to live where we can and make the best of it.

We have the community nurse coming tomorrow for a cough swab to see if we have won our battle against that pesky psuedo bug. 

If not then its off to Southampton for IV's. 

They want to do her surgery to remove her tonsils and adenoids in December so perhaps they might link the two together, I hope so.

Anyway I am off to see two more rentals tomorrow, maybe I might find one that is not totally disgusting! 

Monday, 14 November 2011

Who do we love?.........

...........Peppa Pig!

Huge, monumental breakthrough! 

I gave her physio, she didn't cry!  Not even a whimper!

I am so chuffing happy about this that I am grinning.  I know it is only a small thing, and tomorrow we will probably be back to screaming again, for now I am happy.

So I decided to take her unawares.  She was happily sitting watching Peppa Pig, WHAM, stuck the mask on her face.  She tensed slightly, then just sat back and relaxed.  All the while pushing the air out with every breath, making her lungs stronger. 

Is that just the most beautiful thing you ever heard?.........Probably not.  But it is for me!

A massive breakthrough.  I feel like a weight has been lifted. 

Now I am a little scared that tomorrow this may not happen.  We will have to do exactly the same sequence of events.

All squeamish people, read NO further.

I know that the physio and antibiotics are working though as the amount of gunk coming off her chest is amazing.  It sounds like there is only one drummer in there now, as apposed to thousands!

Story of the day:  Josh wanted to pinch a bit of toast from Georgia's plate earlier and as he went to grab it she sneezed on it.  It put him right off.  Am sure there is a moral in there somewhere!

Before I go, I would like to send love to Gemma (lungsbehavingbadly), and thank her for her advice and support.  You truly can relate to today!

Sunday, 13 November 2011

PCD is here to stay

I think I may have underestimated PCD.

For two reasons really. 

1)  I assumed that nothing would be as bad as heart disease.

2)  I was very naive.

All of a sudden this deadly disease has reared its ugly head.

I was told by someone at some point to not look on the internet into the problems Georgia has.  This was probably the worst advice.  I wish I had looked.  I would have understood what the diagnosis of PCD meant for her quality of life and it would not have been such a shock when she became ill.

We have a visitor.  Pseudomonas.

This horrid little bacteria has set up home in Georgia's lungs and decided to make itself known to us via a cough swab she had done.

I was so shocked.  She had a little bit of a cough and was generally unwell but I didn't for a second think it was anything but being a little under the weather.  Note to self - she will never be just a little under the weather.  When she gets ill, she is really ill.

I would imagine this little bacteria has come from Josh being at pre school and bringing it home.  Mainly as Georgia has not really been out.  Now it has turned to winter we don't take her out for long amounts of time.  So all you mummies and daddies out there that send your kids to school when they are feeling ill, remember that they could be spreading those germs to poorly kids like Georgia!

So now we are on a course of oral antibiotics, not nice ones either!  This is the start of our battle against the pseudo that has taken up residence.  After the course we will have another cough swab done to see if we have won or not.  If not, off to hospital we go for IV antibiotics.  Anything to blast this little bugger away.

This is my first meeting of this particular bug, from what I have read it seems to be a tricky one to get rid of. 

All of a sudden I am more scared by PCD than I ever was of the heart problem.  She is going to be coping with this for the rest of her life.  There is no surgical fix like there is for her heart.  That's frightening.

I know you are all going to say that it wasn't but I feel like this was totally my fault for not being more forceful with physio.  So I have morphed into 'mean mum'.  She may not like it, she may scream and hit and kick but it is for her own good. 

I keep hearing from everyone that it will get easier. WHEN??????

So far every physio leaves us all exhausted, physically and emotionally.   I know it is just something we have to do.  I just wish I didn't have to fight her all the time to make her better.

Safe to say I am having a hard time with PCD at the mo.

It took so long to get a diagnosis for it, I really didn't understand the implications.  Even when she was diagnosed I just shrugged and said 'oh well, just another thing for her to battle'.  I didn't know.

Sometimes I feel really stupid. 

I don't know if anyone else feels this way.  Her respiratory team are fantastic but are miles away.  If it is anything urgent I have to go to our local hospital.  I have taken to carrying around the PCD leaflet, I am so fed up with explaining what it is. After reading it people just seem to underestimate the condition.  I told one particular doctor it is a chronic lung disease and she looked at me as though I was crazy.  I suppose that as she had not heard of it, I must be lying.

You say Cystic Fybrosis, people know exactly what you mean.  Everyone has heard of it.  Mention PCD they think you are talking about the Pussycat Dolls.  Its so frustrating.

Anyway, sorry about the rant.  I am only just discovering the wonders of PCD myself, it sucks.

On a lighter note Georgia has finally started forming words.  'Hello' is a favourite.  She also has become very artistic, she loves colouring in the walls!  Best not link my landlord to this blog now!

Wednesday, 2 November 2011

Midnight Adventures

Sometimes there is no warning.  Just when I get comfortable and feel secure, all of a sudden, out of the blue, a massive wake up call.  Literally.

Georgia had a bit of a cough yesterday, nothing out of the ordinary, just the normal trying to clear her chest.

At 2:10am this morning, I sat bolt upright in bed as if I had been shocked.  I have no idea why.  Maybe I heard the cough, or maybe it is just intuition.  I could hear that rattling breathing echo through the baby monitor, my stomach contracted in fear as I was catapulted back 31 months.  I had got so used to Georgia being well.  Complacent is more the word.  I had finally stopped setting up a hospital bag for her, just in case.  Well that was a mistake. 

To say I was terrified of entering her room is an understatement.  I didn't hesitate at all, but the fear was still there, just as it always has been. 

Her breathing was strained.  She was having no problem breathing out, breathing in was like she was trying to suck air through a blocked straw.  She was all blue around the mouth but with bright red cheeks.  I started mentally packing a hospital bag and mentally preparing myself for one of our midnight hospital adventures.  Firstly, I needed to decide if she might need oxygen, this would require the wonderful help of the ambulance service.  I woke Rob up to ask his opinion.  We decided that I should take her.  So, I called the children's ward as I packed up her bag.  Desperately trying to wake up so I could think straight.  I know now that I was still not fully awake, I left the house without shoes on!  Don't worry I am not totally crazy I did go back in to get some!

I am just so out of practice that I forgot my little hospital routine.  Whilst driving there in the dead of night, all I could think about is the amount of times I had done this trip.  Just Georgia and I.

The doctor decided that she did have a chest infection and that she should be fine with calpol.  Which then sent me into the ravings of a sleep deprived worried mother.  So we came home.  Georgia is still not well.  It sounds like little fireworks are going off inside her chest every time she takes a breath.

Every time I leave St Marys at night I get this weird feeling.  Its so quiet and spooky walking across the car park.  To me it feels like I am being followed.  It doesn't help that they have a freaky looking clown statue outside! 

It feels more like someone wants her.  Like they are waiting for her.  I hate it.  I get this feeling a lot.  Like she has an invisible stalker.  I mostly get it at the hospital.  Well, bugger off, you cant have her.

Our midnight hospital adventures are something that will be with us for life.  Last night has taught me a huge lesson.  We are not normal.  We will never be normal.  No one knows about our adventures, or how it feels. 

I wish we could be normal, to have a simple life, no complications.  It is just never going to happen.  For now, it is something we do, together.

Tuesday, 20 September 2011


I haven't blogged for a while.  I suppose I didnt really feel the need to anymore.  I have got most of my troubled memories off my chest.  Or so I thought.

Just one conversation can take me back to a way of feeling.  For the person in question I was talking to I will not mention what was said.  This conversation completely took me back to being pregnant with Georgia and having to make the decision to keep her not.  As hard as it was, it was also easy.  That sounds bizarre but in that situation all I could do was imagine how it would feel to be holding my baby when she was no longer alive, to see if I would be able to cope with the knowledge that it had been my decision to do that.  Don't misunderstand me, I can understand how that decision can be made.  I wonder if, had we known how hard it was going to be would we have made the same decision?  Who knows. 

My heart breaks for the women who don't get given the choice.  That just lose their babies with no warning.  That, for me, would be harder than anything we have been through.  We have been granted time, time to know her, time to love her, time to show her she is our world.  For that I am so grateful. 

So I am having a day feeling torn between feeling great for having our little Georgia and feeling sad for all the ladies that only knew their babies for a short time. 

These women should be recognised for the strength they have.  I am not sure I would cope.

Monday, 15 August 2011

Black clouds and glowing toes

I always told myself I didn't suffer with depression.  I fought it for years.  It's like the silent disease. It doesn't give you any warning either.  One day I can be perfectly happy and just getting on with life, then the next I wake up with a huge black cloud around me threatening to suffocate me.  I suppose it has always been there, I just never acknowledged it before.  The thing is, you cant see it.  I have always hidden it really well, but now it has started to seep through to everything.  I feel so alone most of the time, even though I am surrounded by people. 

Nobody really understands either.  It's a selfish, lonely, unbearable disease that makes it hard to function.  I tried tablets, they helped for a while.  I tried therapy, but I felt like I was being too self involved.  So now I just live with it.  The good days outweigh the bad, for now.  If it ever gets to the point where it takes over then I will have to do something about it.  After all, when I am under my black cloud I am really difficult to live with. 

I took Georgia over to Southampton a couple of weeks back.  She needed to have a sleep study.  I was so nervous.  It has been quiet a long time since she has had to stay in hospital overnight. 
The afternoon that we were due to leave I was rushing about trying to pack everything she may possibly need.   

It was not just the staying in hospital really.  It's also that extra hour on the ferry where I need to keep her entertained.  It cost me a fortune to get the ferry over.  Yet another expense when we struggle to even feed us all.

Georgia was so good though.  She is so well behaved, we are lucky.  She fell asleep at 7.30pm and we managed to get the monitors on her without waking her up.  I laid on a camp bed beside her cot just watching the little glow of her sats monitor through her sock.

The doctor on the ward came in to see us at 10pm.  She said she needed to listen to Georgia's heart.  Why she couldn't have done that when she was awake I will never know.  Of course, she woke her up.  Georgia was then awake until 3am.  So it was more of an awake study! 

In the morning we were both so tired.  I packed our stuff and was out of the hospital by 7.15am.  By 8am we were on the ferry, finally arriving home at 9am.  It was a long night.  But it is done now.  Thank god.

So the results have shown she will probably need her tonsils and adenoids out.  Easy for any other child.  Not for Georgia.  I keep having horrific flashes of ventilators and a little blue Georgia.  What if they try to take her off the ventilator and she has another collapse?  I know she is stronger now but I really don't want her to have to go through that again.

We have 3 appointments in September over in Southampton.  I have no idea how we are going to pay for the ferry.  We can't afford to pay our bills, let alone travel.  We have been made homeless once, I think it's soon to be on the cards again.  I don't understand how other people cope.  It's not like we go and splash out.  All our clothes have holes in them, the kids have been playing with the same toys since Christmas.  We never have a holiday, we never go out to places that require money.

Where is the help for the people that really need it?

Thursday, 21 July 2011

Is she just unlucky?

To look at Georgia now, you would never know.

You would expect that the pain she suffered would show in some way.  I don't know how, but I expected her to always carry the horrifying experience with her.  Up till now, there is no trace of it.  Maybe it is because I carry it with me.  It's probably more because I carry enough for both of us!  I prefer it that way.

I don't think Josh has any lasting memories of any of it really.  I am pleased about that.  He is young enough to forget, or not totally get the gravity of certain situations.  I would be devastated if he remembered her going into respiratory arrest.  It was frightening to us, imagine how it felt for a 3 year old.

After Georgia was released from hospital, I was just waiting for the next drama to happen.  When it didn't, I felt a bit lost.  I know it sounds stupid, but I felt like I had nothing to fight anymore.  So what I did instead was re live everything that had happened.  I started to drive everyone insane with my constant chatter, I repeated myself all the time.  It was my way of dealing with it. 

That is one of the reasons for this blog.  I don't have to drive everyone crazy, I can write it here and then it's done.

This way, our journey is forever told.  It's a comfort to me to know that I have shared it, as awful as it was.

I know we are not finished yet.  I know there is more but my little family is doing well, for now.  We are happy.  Happier than we have been for a long time.  It has put things into perspective.

Before Georgia's surgery, she had a nasal brushing done to test for something called PCD.  Primary Ciliary Dyskinesia is a respiratory disease that would cause the symptoms she was showing.  Blocked nose, coughing, constant chest infections and colds.  The nasal brushing is just a tiny little brush that looks like a cotton bud for a Barbie, being brushed round the inside of the nose.  It doesn't hurt, it just is very uncomfortable and made her eyes water.

Unfortunately the test needs to be done when the patient has no virus, Georgia always had a virus! 

Obviously, the first test was inconclusive.  So we travelled over to Southampton again to get another test.  Again, they couldn't diagnose. 

Our lovely PCD nurse, Amanda, gave us a course of antibiotics to give Georgia.  This was to try and get a good brushing and hopefully get her diagnosed.

Again, this shows the determination of the staff.  Amanda was brilliant (and still is), she had a feeling that Georgia did have PCD.  She finally took Georgia's case to a meeting of all the PCD specialists.  We finally got the diagnosis.

PCD is still in the research stage.  To treat it, Georgia is on constant antibiotics (to stop any infection) and I have to do daily physiotherapy.

My GP once told me that he thinks physiotherapy is a load of rubbish that was made up to get money out of people.  Well he is wrong.  If he saw the difference in Georgia since starting physio he would eat his words.

I am not saying the physio is easy.  It's awful.  I have to hold a little mask over her nose and mouth for 5 minutes a time.  At the moment I am only doing it once a day but I will have to do more soon. 

Georgia screams.  She thinks I am trying to stop her breathing.  On top of this, I worry that I am putting more stress on her heart.  It's a vicious circle.  It's good for her to cry as it builds up her lung strength, it's bad for her to cry as it puts pressure on her heart.

I now have a nasal spray for her too.  It shoots a small spray up her nose to unblock it.  It seems to be doing the trick.  She quite likes that too, it's not as bad as physio.

I read an interesting theory.  If you are not interested in the science of it, then skip this last bit! 
The cells that are created when you are conceived, are cilia.  As Georgia's don't work as they should, they created her the wrong way round.  The heart is the first thing to develop.  Maybe PCD is the reason for all of her problems.

Rob is a carrier of the PCD gene, so am I.  You need both parents to carry it.  Josh was lucky, Georgia wasn't.