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!
Tuesday 22 November 2011
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!
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!
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.
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.
Subscribe to:
Posts (Atom)