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
Friday 15 June 2012
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!
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.
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.
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.
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.
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