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.

Thursday 14 July 2011

Happy home?

The day Georgia came home was a mix of emotions.  I was happy she was home and we didn't have to keep juggling our lives.  I was scared that I was going to do something wrong and not look after her properly.  I was worried that I wouldn't notice when something was wrong.

Sometimes life gets in the way of everything else.

2 weeks later Georgia, being the little monkey she is, pulled out her feeding tube.  That's the thing with her, she will only do things when she is ready, you can't force her.  I made the decision there and then.  I was going to leave the tube out and see if she got hungry enough to eat.  I know that is a quite harsh way to do it, but if I didn't then she would depend on the tube forever.

All day I tried her with a bottle.  All day she refused.  I started to doubt myself by the evening.  I was planning to try her one last time, if it didn't work then it was another trip up to the hospital. 

I packed a bag for her.  With a baby you take so much with you everywhere you go, with a heart baby you take everything bar the kitchen sink!  While I packed it, Rob tried her with a bottle again.  She drank it. 

Sometimes I need to just give in and let Rob do it.  It's not that Georgia prefers him, it's the fact that I had tried all day, and every time I got more and more stressed.  She could feel it.

So there you have it, again she does things in her own time. 

From September to December, life felt almost normal.  Georgia was still getting chest infections every 2 weeks and we still had the odd trip up to the hospital with her, but it was as if everything had slowed down.  It was not so out of control.

On Christmas eve, we received our repossession court order.  The bad times were not over yet.

We had done nothing but worry about the house and our debts, all of which we incurred when Georgi was ill. 

Rob and I were declared bankrupt on the 26th Jan 2011.  Our mortgage was to be included in it. 

We had to vacate our house on the 15th March 2011. 

Now we were homeless. 

Tuesday 12 July 2011

Little miss smiles

Georgia was finally moved back onto the Nursery part of the Ocean ward 31 days after her admission.  She had been weened off morphine but was hanging on to the last little bit of oxygen.  If they took the oxygen off her, then her sats would drop slightly. 

She had started smiling again.  Really big beaming smiles.  I was so proud of my beautiful little brave girl!

One morning when I arrived on the ward, I was told she had been completely off oxygen for 6 hours in her sleep. It hadn't affected her sats and she was doing well. 

When they did ward rounds, the consultant told me that Georgia could return to our local hospital the following day!  She was still on a drug for hypertension and needed to be weened off it, they knew that our local hospital would be able to do that.

From my previous experience at our local hospital, I was worried. 

Although I wanted nothing more than for Georgia to come home, she was safer here than anywhere else.  They had saved her life so many times.  What if her airway collapsed again? 

The next day, Georgia was to be transferred by ambulance over the water.  Closer to home.  I had so many emotions that day.  I was devastated to be leaving all these wonderful people.  I also felt exceptionally guilty for leaving the parents that I had made friends with. 

Mike was travelling over with Georgia in the ambulance, as he was the only one she would behave for!  I followed in my car. 

As we were leaving the ward, we had so many people to say goodbye to.  I cried the whole time.  It's not that I didn't want to leave, its because these people went through the hardest part of our lives with us.  It felt like I was taking Georgia away from the people that loved her as much as I do.

By the time we got to St Marys I had pulled myself together.  It was weird being back there.  It was like it had changed.  We had been through so much since being there last. 

It was only as I was leaving that evening that I realised.  It wasn't the place that had changed, it was me.  I have become who I am supposed to be.

Georgia has given me that.  I am now more patient.  I know that life is too short to waste it.  If Georgia can be so strong, then so can I.

Even though we were back on home ground, Georgia still had some battles to win.  She still had a feeding tube and we were trying to get her to take a bottle.  It was hard for her as she had lost the ability to suck.  She needed to though.  No food or drink ever passed her lips.  She constantly had a dry mouth, we used to have to change her tube and stick it back to her face.  We also had to swab her mouth to moisten it and put Vaseline on her lips to stop them drying out.

We were told she would never drink from a bottle after having lost the suckling.  Luckily that was a very stupid think to say to me.  I was then all encompassed with getting her to drink. 

Georgia would love to sit outside by the duck pond at the hospital.  She had been in hospital for 36 days, this was the first bit of sunlight she got.  I would sit there watching her with a ghost of a smile on my face.  She would squint up into the sun and smile. 

She appreciates the sun, the air, the trees, the clouds.  All the things we take for granted.

Saturday 9 July 2011

Rehab

Georgia was on the ventilator for 7 days.  When they took her off the second time, they decided to give her something called CPAP.  Basically, it is just another form of ventilation, it's just less invasive. 

This seemed to do the trick.  As it was pushing air into her lungs, it strengthened the bronchial tubes that were the problem before. 

Finally 3 days later, she came off CPAP and was breathing on her own.  She was still being given a small amount of oxygen through her nose, and she was still on morphine for the pain.  They wanted to send her back up to the Ocean Ward so the nurses there could try and ween her off both.  If it was stopped straight away then she would crash.

The day she was being sent back to the Ward was the day Rob came to visit her, after not seeing her for a week.  I had spent every moment with her, trying to make her smile or at least acknowledge I was there, I got no reaction.  She was still in her world of pain.

The moment she saw Rob, a small shadow of a smile passed her face.  I have never been so happy in my life.  She smiled, a small smile, but a smile!   Of course I was a bit miffed that after all my hard work it was Rob that caused it.

She went from strength to strength after that day.  I thought that finally we were on the road to recovery and could go home!  I was so pleased to be back on the Ocean Ward, with a smiling Georgia!

Then they started to reduce her morphine.  She had been on it so long, she had started to depend on it.  It was like my baby was in rehab.  The day they reduced it, it was only by a tiny amount.  She screamed for hours on end.  They finally sedated her in the evening, partly for me to have a break, mainly for her to get some sleep.

When she finally drifted off in my arms, I slowly lowered her into the cot and gingerly stepped away.  I know she was sedated but I was so scared she would wake up and scream again!  It was only as I got a few meters away that I exhaled.  I hadn't even realised I was holding my breath.

My whole body hurt.  Probably nothing compared to the withdrawal pain she had.  I was so mentally and physically exhausted at this point.  I had hit a wall.  There is always a moment when it all catches up, this was it.  I went back to the house and fell asleep instantly.

I hope it doesn't sound too heartless but, the next day, I didn't want to go back.  Not if it was going to be another day like the day before.  My feet felt like lead as I dragged myself back to the ward with a heavy heart.

I could hear her screaming before I even entered the ward.  On the plus side, all this screaming would strengthen her lungs! 

The only nurse she would be content with on the Ward was Mike.  She is a big softy when it comes to men!  So for most of the day, Mike carried her around with him, or pushed her in a pram while he was working. 

As soon as he went home the screaming started again.  Sedation for sleep was used again.  I went back to the house and felt the same way as the day before.

This became my groundhog day for 3 weeks.  I went, she screamed, I comforted, they sedated.  In between this, every now and then, a little shadow of Georgia's former self peeped through.  She would smile when I sang to her.  She still does that.