The night before Georgia's surgery had been booked, a tiny baby was admitted to the Ocean Ward. This tiny little mite was so ill that they had put an oxygen tent over her head to keep her sats up. She needed immediate surgery and it was going to be quite complex. The surgeons decided it was crucial for her to have surgery the next day and so moved our surgery to a different day.
I was pleased in a way. They obviously thought Georgia was not too much at risk. On the other hand, I just wanted to get it over with. Her surgery was then booked for the following Wednesday.
So another week on the Ocean Ward. We became good friends with the nurses, doctors and other parents. There was a couple who were also staying in Heartbeat House with us who we got on well with. It was great for Rob as the World Cup was on and he had someone to disappear with to the parents room to watch it, without feeling too guilty!
I have said before that heart children do often look well, most of the time you wouldn't realise there was anything wrong at all. This was proved wrong for us though when we met a couple who had twins. One twin had a heart defect and the other was fine. These little girls were 5 years old and the difference between them was amazing. They were identical but to look at them you would have thought one was a couple of years older than the other. The 'Heart' twin was so tiny and fragile compared to her boisterous sister! Perhaps that may have been the difference in their personalities as well, I don't know really.
The Ocean Ward has such a peaceful aura to it. Even though at any given time every bed space is full, it still seems quiet and serene. When I was allowed to take Georgia off her monitors to walk around we were often nearly run down in the corridors by children in little cars zooming about everywhere! The play specialists they have there are great. These children have faced the worst but are still all smiling and giggling with the staff. I remember one doctor had a little girl on his lap, she had obviously just had surgery as they were not picking her up under the arms, he was using his mobile to ring the desk phone as every time it rang she went purple with laughter! These small things make it so much easier to live on the ward.
When an emergency happened it affected us all. You become so involved in everyone around you when you are in that sort of environment, I think I mainly did that so I didn't have to focus on our situation too much!
One day there was a 'red light' situation. As soon as the alarm sounded nurses came running from every room and doctors from every station, they surrounded the cot for what seemed like an eternity then moved the child back to intensive care where they could be monitored more closely. It took nearly half an hour for, not only the patients, but the nurses and doctors to go back to the normal routine. It was so shocking and unexpected for us that we were stunned at how they just took it in their stride and remained calm. Again, they then made us feel better and became the support we needed. How do the Nurses manage to be so supportive and upbeat after all they see and do? I could never imagine the pressure they feel.
I wrote in one of my earlier blogs about me being judgemental when I really didn't know the facts and on the Ocean Ward I was guilty of this, we were always there and couldn't understand how the parents of the other babies were not there constantly. I understand now, it is a hard environment to be in and especially when your baby has been there for months! I would like to publicly apologise to all parents that I judged, even though I never judged to your face because I am a coward!
The following Tuesday we were told that Georgia's heart surgery had been moved to Friday. Frustrating is not the word! I was devastated. Plus I had been washing Georgi in her MRSA gel for over 2 weeks now, she was more than ready for surgery! So you can imagine on the Thursday evening I was just waiting for someone to come and tell me her surgery had been cancelled again, the anaesthetist came and told us all the risks and got us to sign the consent forms. Even when we went back to Heartbeat House later that night I was still waiting for the phone call for cancellation. I fell asleep not worrying, I thought that it wouldn't happen as it had been cancelled so much before.
At 6am the ward called me to say they were taking her to theatre at 9am. Have you ever had that feeling when you are climbing the stairs and you miss a step, that lurching fear in your stomach? That's what it felt like.
Thursday 26 May 2011
Wednesday 25 May 2011
Hearts and Breathing, anything else?
Next time you go into a McDonalds, look for the donation tins. They have them on the drive-thru too. The donations go to Wessex Heartbeat which is a charity that run a house opposite Southampton hospital. This house was to be our haven for the next month after arriving on the ward.
Georgia was moved to the Nursery to be watched more closely for her 'episodes'. As there are 4 cots in the nursery, all quite close together there really is no room for parents to sleep at the bedside. I think it is also in case of any emergencies the staff can get to the beds quickly and easily. We were told that I could stay on the ward but it seemed silly if I couldn't stay next to her so we stayed in a hotel for the first couple of nights, returning the next morning as soon as we could.
The second day of being on the Ocean Ward was the first time I had ever heard of a Cardiac Catheter. The respiratory team had been up to see Georgia and decided that the best thing to do to get to the root of her problem with breathing was to carry out a bronchoscopy, this involved putting her under general anesthetic then inserting a small camera down her throat to enable them to what was going on. While she was there the cardiac team thought this was an ideal moment to do a cardiac catheter, this means they would pass a tube into the top of Georgia's thighs, near the groin, then feed it into one of the main arteries leading to the heart, it would then be fed right up the body to the left and right sides to give a more detailed view of the heart via x-ray. One of the doctors told me it was like giving them a road map of her problems.
This was all fine but we were then told that they were worried that Georgia's breathing episodes may have put more strain on her so they may take her straight down for surgery following this procedure. Well that was definitely not what I expected to hear! I didn't think they would do her surgery until the breathing problem had been solved so I was terrified.
Being in a big hospital like that you would think you would have lots of things to do with your time, nope. Rob and I needed to find somewhere to stay that evening so asked the ward sister about Heartbeat House. We were referred over there just as Georgia was to be taken down for her procedures so we put it off until she was under anesthetic.
2 Hospital porters turned up with a gurney, this made me laugh, how would Georgi stay on a gurney??? Then I realised they wanted me to get on it with her! We travelled in style to the Cardiac Cath waiting room. To this day I could still not tell you where that is, it is all such a blur. I was so nervous holding her as we waited for them to prep the room. Our little baby being so oblivious to what was about to happen.
Once we were taken into the theatre and I had to hand her over to the doctor, I could feel my pulse racing, this was not how it was supposed to happen, we were supposed to be able to control when and what happened to our daughter, but there she was surrounded by all these unfamiliar people, I began to panic. As they put the mask over her face to put her under I just wanted to run away, I actually remember turning to Rob and saying 'I don't want to be here anymore'. The doctor turned to me and said 'say goodbye now, she is going to sleep, do you want to give her a kiss?' I just couldn't, watching her slowly losing consciousness was enough for me.
We walked in a daze towards the lift to go and get our room at Heartbeat House, I couldn't stop crying, I felt like I would never see her smiley little face again.
It's strange that the main thing I remember about that moment was another couple getting in the lift and the woman was crying as well as me, we locked eyes and gave each other watery smiles. When we got out on the ground floor, in true Rob style, he said it was the most emotional lift he has ever been in. Idiot.
The whole way through this awful experience we had a lovely nurse from the Ocean Ward with us, she was the voice of reason and kept me calm, most of the time! Thinking back, she had probably done that journey with thousands of parents and children over the years but still remains the support for us all.
Heartbeat House was amazing, it is lots of rooms with a communal kitchen, garden and bathrooms. The lovely ladies running it showed us to our room and we fell asleep from pure exhaustion whilst talking about Georgia and Josh.
A few hours later the Ward called us to say Georgia was on her way back up to them, the Cardiac team had decided it was not necessary for the surgery to be done today. Relief? No not at all. This means we would have to do this again.
On getting back to the ward she had just arrived all croaky and sore. She grizzled at us for an hour or so until Rob got her laughing again! The respiratory team came first lead by Dr Roberts, who we will be seeing for a very long time, to tell us they had diagnosed her with Bronchomalacia. It means that the cartilage in the walls of the bronchial tubes are weak and prone to collapse. Therefore when Georgia was crying her airways were closing. Finally we know why, its been so long that I thought it was just what would happen for the rest of her life! We found out that the cartilage usually gets tougher itself in time. The bad side of this was that it would put a lot of pressure on her after her heart surgery, especially when she would be taken off the ventilator. The ventilator in essence breathes for her so when you take that away she is more likely to have a collapse.
This was the Tuesday, surgery was booked for the Friday.
Georgia was moved to the Nursery to be watched more closely for her 'episodes'. As there are 4 cots in the nursery, all quite close together there really is no room for parents to sleep at the bedside. I think it is also in case of any emergencies the staff can get to the beds quickly and easily. We were told that I could stay on the ward but it seemed silly if I couldn't stay next to her so we stayed in a hotel for the first couple of nights, returning the next morning as soon as we could.
The second day of being on the Ocean Ward was the first time I had ever heard of a Cardiac Catheter. The respiratory team had been up to see Georgia and decided that the best thing to do to get to the root of her problem with breathing was to carry out a bronchoscopy, this involved putting her under general anesthetic then inserting a small camera down her throat to enable them to what was going on. While she was there the cardiac team thought this was an ideal moment to do a cardiac catheter, this means they would pass a tube into the top of Georgia's thighs, near the groin, then feed it into one of the main arteries leading to the heart, it would then be fed right up the body to the left and right sides to give a more detailed view of the heart via x-ray. One of the doctors told me it was like giving them a road map of her problems.
This was all fine but we were then told that they were worried that Georgia's breathing episodes may have put more strain on her so they may take her straight down for surgery following this procedure. Well that was definitely not what I expected to hear! I didn't think they would do her surgery until the breathing problem had been solved so I was terrified.
Being in a big hospital like that you would think you would have lots of things to do with your time, nope. Rob and I needed to find somewhere to stay that evening so asked the ward sister about Heartbeat House. We were referred over there just as Georgia was to be taken down for her procedures so we put it off until she was under anesthetic.
2 Hospital porters turned up with a gurney, this made me laugh, how would Georgi stay on a gurney??? Then I realised they wanted me to get on it with her! We travelled in style to the Cardiac Cath waiting room. To this day I could still not tell you where that is, it is all such a blur. I was so nervous holding her as we waited for them to prep the room. Our little baby being so oblivious to what was about to happen.
Once we were taken into the theatre and I had to hand her over to the doctor, I could feel my pulse racing, this was not how it was supposed to happen, we were supposed to be able to control when and what happened to our daughter, but there she was surrounded by all these unfamiliar people, I began to panic. As they put the mask over her face to put her under I just wanted to run away, I actually remember turning to Rob and saying 'I don't want to be here anymore'. The doctor turned to me and said 'say goodbye now, she is going to sleep, do you want to give her a kiss?' I just couldn't, watching her slowly losing consciousness was enough for me.
We walked in a daze towards the lift to go and get our room at Heartbeat House, I couldn't stop crying, I felt like I would never see her smiley little face again.
It's strange that the main thing I remember about that moment was another couple getting in the lift and the woman was crying as well as me, we locked eyes and gave each other watery smiles. When we got out on the ground floor, in true Rob style, he said it was the most emotional lift he has ever been in. Idiot.
The whole way through this awful experience we had a lovely nurse from the Ocean Ward with us, she was the voice of reason and kept me calm, most of the time! Thinking back, she had probably done that journey with thousands of parents and children over the years but still remains the support for us all.
Heartbeat House was amazing, it is lots of rooms with a communal kitchen, garden and bathrooms. The lovely ladies running it showed us to our room and we fell asleep from pure exhaustion whilst talking about Georgia and Josh.
A few hours later the Ward called us to say Georgia was on her way back up to them, the Cardiac team had decided it was not necessary for the surgery to be done today. Relief? No not at all. This means we would have to do this again.
On getting back to the ward she had just arrived all croaky and sore. She grizzled at us for an hour or so until Rob got her laughing again! The respiratory team came first lead by Dr Roberts, who we will be seeing for a very long time, to tell us they had diagnosed her with Bronchomalacia. It means that the cartilage in the walls of the bronchial tubes are weak and prone to collapse. Therefore when Georgia was crying her airways were closing. Finally we know why, its been so long that I thought it was just what would happen for the rest of her life! We found out that the cartilage usually gets tougher itself in time. The bad side of this was that it would put a lot of pressure on her after her heart surgery, especially when she would be taken off the ventilator. The ventilator in essence breathes for her so when you take that away she is more likely to have a collapse.
This was the Tuesday, surgery was booked for the Friday.
Sunday 22 May 2011
Where we need to be
By this point Georgia was having bad chest pains from her heart which made her scream, which in turn stopped her breathing. Eventually she was admitted to St Marys until her surgery as she needed oxygen constantly.
How do you stop a baby crying when they are in pain? I tried to keep her calm all the time but it was just not possible.
As wonderful as St Marys staff were, I think they underestimated Georgia's condition. I felt like I was trying to prove how ill she was all the time. She was put in her own room by the entrance of the hospital, which happened to be really far away from the nurses station, so when I had to leave to put Josh to bed I was terrified she would cry and stop breathing and no one would know. She did have a sats monitor on her foot which alarmed when it didn't pick up a trace but a couple of times when I arrived back it was turned off! I hated leaving but I had too.
St Marys was a lonely place for me too. Georgia still slept most of the day so I just sat next to her and watched her all day. Sometimes I wondered if I would be better off having her at home. She stopped breathing at least 3 times a day and St Marys saw this as a normal occurrence for a heart baby. I agreed as I had nothing to measure it against.
One particular day she was so sick that I ran out of clothes for her, I decided to nip to the shops to buy her some more baby gro's as she had nothing to wear. As I left the hospital my car exploded! The fuel line had gone, it was the last thing I needed. I got it to the Ford garage, and left it with them. On hearing the story, one of the girls that worked in the rental part offered me a rental until my car was fixed for half price! You see there are some great people out there!
Realising that I need my car to be trustworthy I went back to the garage and enquired about getting a car on HP. I needed to be safe in the knowledge I could get Georgia to and from the hospital with no problems. 3 weeks later I had a trustworthy Ford car, which would see us through the journeys to Southampton.
On the Saurday before Georgia's surgery she was still an inpatient at St Marys. I asked them what time the Ambulance would be transferring her over on the following day. I was told then, and only then, that she was not being transferred so I would have to take her. So basically I would have to get on an hours ferry journey across the Solent with a baby that stopped breathing frequently and required oxygen?????? I was furious and threw a tantrum, those of you who have never seen a tantrum of mine before it is a bit like the incredible hulk! The Ward Sister went to call to see if we could have an ambulance, she returned 5 mins later to tell me that there were none available because they were all at the Isle Of Wight Festival. WHAT????? So every paediatric ambulance was at the Festival and were not able to transfer a small baby over? I don't think so. Can you imagine what it will be like if they close the Ocean Ward? Not only would we have taken Georgia on that hours ferry journey, it would also have been the car trip to the ends of the earth. People just didn't listen at all.
So on the Sunday morning Rob and I picked her up from St Marys and armed with a tank of oxygen we boarded the ferry. As expected she stopped breathing half way across the Solent, to make matters worse it was really busy. As I have said before, people are so quick to judge, we were stared at like we were mad. Can you imagine holding your child in your arms when she is blue and not breathing, while you are desperately trying to get an oxygen mask on her? To the ferry companies credit, one of the staff came over to help.
One thing I have forgotten to mention is that Georgia sweated, constantly. She was aways clammy. We bathed her, like Josh, every night but by morning her hair and skin was greasy, this is a heart thing. It's like the equivalent of me or you running everywhere, but her heart did it even when she slept. That armed with her continuous cough made sleeping for a long time hard for her so she tended to cat nap. Good for her, but not so good for us when we had to be up every 3 hours to feed her anyway. Every feed took at least half an hour too, then sometimes the meds clashed in between feeds so we would only get an hours sleep at the most.
On arrival at Southampton Hospital I could have literally skipped into the Ward, I was so happy we were finally there and that someone was going to do something for her. The nurse that was working on the reception desk was one that we knew very well from our previous stay, as we got to her I lumped this huge tank of oxygen on to the desk. She looked at me confused asking why I had it and I replied that it was the only way to get Georgia there safe.
She took us into the ward to Georgia's bed space as I was explaining her breathing. I got the impression that she was doubting the seriousness of it as St Marys had brushed over it. Anyway she said if Georgia had one of her 'episodes' then to ring the nurses bell.
We got settled in and packed all of Georgia's things in her little cupboard, saying hello to all the nurses and other mums and dad's.
Suddenly Georgia started to scream and started going blue. We pressed the nurses bell and within seconds Georgia was taken from my arms put on oxygen, there were at least 8 nurses and 3 doctors surrounding her. I knew it was bad. They reacted exactly how I thought they would, they tried her with a nebuliser but that didn't work either. The Surgeon came to see us shortly afterwards and advised us that due to the breathing problems they would want to cancel the surgery the following day, they were not happy to operate until they found out what was causing the respiratory arrests.
We were gutted, after all this hard work and time of watching her struggle, now we would have to wait longer. I understood why they couldn't do it but I was so fed up of waiting.
Poor Georgia was moved to the nursery so they could keep a close eye on her, this meant we couldn't sleep at her bedside, again she was on her own, but in the best possible place with the best possible people. Now we just had to wait for the respiratory team to look her over and reschedule surgery.
Once I got her to sleep that night and lowered her slowly into her hospital cot I breathed out, I felt like I had not taken a breath in so long. I felt safe now. I knew she was ill but just looking around me on that ward made it all better. To have nurses and doctors who know exactly what to do was such a relief. I knew they loved each and every little life that was under their care.
How do you stop a baby crying when they are in pain? I tried to keep her calm all the time but it was just not possible.
As wonderful as St Marys staff were, I think they underestimated Georgia's condition. I felt like I was trying to prove how ill she was all the time. She was put in her own room by the entrance of the hospital, which happened to be really far away from the nurses station, so when I had to leave to put Josh to bed I was terrified she would cry and stop breathing and no one would know. She did have a sats monitor on her foot which alarmed when it didn't pick up a trace but a couple of times when I arrived back it was turned off! I hated leaving but I had too.
St Marys was a lonely place for me too. Georgia still slept most of the day so I just sat next to her and watched her all day. Sometimes I wondered if I would be better off having her at home. She stopped breathing at least 3 times a day and St Marys saw this as a normal occurrence for a heart baby. I agreed as I had nothing to measure it against.
One particular day she was so sick that I ran out of clothes for her, I decided to nip to the shops to buy her some more baby gro's as she had nothing to wear. As I left the hospital my car exploded! The fuel line had gone, it was the last thing I needed. I got it to the Ford garage, and left it with them. On hearing the story, one of the girls that worked in the rental part offered me a rental until my car was fixed for half price! You see there are some great people out there!
Realising that I need my car to be trustworthy I went back to the garage and enquired about getting a car on HP. I needed to be safe in the knowledge I could get Georgia to and from the hospital with no problems. 3 weeks later I had a trustworthy Ford car, which would see us through the journeys to Southampton.
On the Saurday before Georgia's surgery she was still an inpatient at St Marys. I asked them what time the Ambulance would be transferring her over on the following day. I was told then, and only then, that she was not being transferred so I would have to take her. So basically I would have to get on an hours ferry journey across the Solent with a baby that stopped breathing frequently and required oxygen?????? I was furious and threw a tantrum, those of you who have never seen a tantrum of mine before it is a bit like the incredible hulk! The Ward Sister went to call to see if we could have an ambulance, she returned 5 mins later to tell me that there were none available because they were all at the Isle Of Wight Festival. WHAT????? So every paediatric ambulance was at the Festival and were not able to transfer a small baby over? I don't think so. Can you imagine what it will be like if they close the Ocean Ward? Not only would we have taken Georgia on that hours ferry journey, it would also have been the car trip to the ends of the earth. People just didn't listen at all.
So on the Sunday morning Rob and I picked her up from St Marys and armed with a tank of oxygen we boarded the ferry. As expected she stopped breathing half way across the Solent, to make matters worse it was really busy. As I have said before, people are so quick to judge, we were stared at like we were mad. Can you imagine holding your child in your arms when she is blue and not breathing, while you are desperately trying to get an oxygen mask on her? To the ferry companies credit, one of the staff came over to help.
One thing I have forgotten to mention is that Georgia sweated, constantly. She was aways clammy. We bathed her, like Josh, every night but by morning her hair and skin was greasy, this is a heart thing. It's like the equivalent of me or you running everywhere, but her heart did it even when she slept. That armed with her continuous cough made sleeping for a long time hard for her so she tended to cat nap. Good for her, but not so good for us when we had to be up every 3 hours to feed her anyway. Every feed took at least half an hour too, then sometimes the meds clashed in between feeds so we would only get an hours sleep at the most.
On arrival at Southampton Hospital I could have literally skipped into the Ward, I was so happy we were finally there and that someone was going to do something for her. The nurse that was working on the reception desk was one that we knew very well from our previous stay, as we got to her I lumped this huge tank of oxygen on to the desk. She looked at me confused asking why I had it and I replied that it was the only way to get Georgia there safe.
She took us into the ward to Georgia's bed space as I was explaining her breathing. I got the impression that she was doubting the seriousness of it as St Marys had brushed over it. Anyway she said if Georgia had one of her 'episodes' then to ring the nurses bell.
We got settled in and packed all of Georgia's things in her little cupboard, saying hello to all the nurses and other mums and dad's.
Suddenly Georgia started to scream and started going blue. We pressed the nurses bell and within seconds Georgia was taken from my arms put on oxygen, there were at least 8 nurses and 3 doctors surrounding her. I knew it was bad. They reacted exactly how I thought they would, they tried her with a nebuliser but that didn't work either. The Surgeon came to see us shortly afterwards and advised us that due to the breathing problems they would want to cancel the surgery the following day, they were not happy to operate until they found out what was causing the respiratory arrests.
We were gutted, after all this hard work and time of watching her struggle, now we would have to wait longer. I understood why they couldn't do it but I was so fed up of waiting.
Poor Georgia was moved to the nursery so they could keep a close eye on her, this meant we couldn't sleep at her bedside, again she was on her own, but in the best possible place with the best possible people. Now we just had to wait for the respiratory team to look her over and reschedule surgery.
Once I got her to sleep that night and lowered her slowly into her hospital cot I breathed out, I felt like I had not taken a breath in so long. I felt safe now. I knew she was ill but just looking around me on that ward made it all better. To have nurses and doctors who know exactly what to do was such a relief. I knew they loved each and every little life that was under their care.
Friday 20 May 2011
It's not all bad!
After reading my last couple of posts I have realised that I haven't added any of the good stuff. It was hard going through it but we had great support.
Rob is the most wonderful man I have ever known. He can make mole hills out of mountains, he tends to see when I am freaking out and calm me down instantly, mainly by taking the piss!
He is the best dad. I didn't have my dad in my life when I was young and therefore never really knew how a dad could be. Rob's dad died when he was in his early teens so Rob had experience of what being a good dad was, and he does it brilliantly. Our children adore him, Georgi smiles as soon as he walks into a room and Josh jumps all over him!
I cant tell you how much I love him, it's hard to put that amount of love into words.
He is the only man I know that can sit and eat a pack of 12 minced pies with 4 pints of milk and have no consequences, apart from little puffs of Christmas the next day (his words, not mine). He is also the only man that can be as rude to my mum as he is to me and get away with it. They lived together when I was in hospital with Georgi, so now they call each other Roomies.
If I ever have a problem, I call my mum. I speak to her every day. She is another person I could not live without. So it's a good thing she gets on well with Rob!
When Georgia was ill I never showed anyone how hard I truly found it apart from her, she is and always will be my support, I sometimes thought I was leaning on her a bit too much. I would phone her in tears, but bless her, I know she was thinking that being miles away she couldn't help, but she did, just by listening. When I was in labour with Georgi mum nipped out of the room to phone someone just as I needed to push! We had to get the midwife to track her down while I was trying to stop pushing! Don't worry though, she didn't miss it.
That is the thing about my mum, she never misses it, ever. She was there when Josh was born, she was there when we got married, she was there when Georgia came into the world and she was there when Georgia nearly left it again.
The other thing you should know about my mum is she is a complete numpty. Her texting ability is second to none, she blames it on having 'fat fingers and a touch screen phone', I blame it on her numptiness. She makes me laugh, especially when she texts me saying she 'has pissed my blog all round the office'...........'PASSED, I MEAN PASSED'
When I told my Mum and Marc about Georgia's condition they were devastated and have done everything they possibly could to support us.
Rob's mum has been wonderful too. She works in Southampton so when Georgia was on the Ocean Ward she would come straight from work to keep me company. Some Saturdays she went over there to give me a day off to see Josh and Rob. She spends every weekend with us now, which I enjoy as she was there through the good and the bad, it is good to talk to her about the hospital bit.
Georgia is a lucky girl to have all these wonderful people in her life.
Rob is the most wonderful man I have ever known. He can make mole hills out of mountains, he tends to see when I am freaking out and calm me down instantly, mainly by taking the piss!
He is the best dad. I didn't have my dad in my life when I was young and therefore never really knew how a dad could be. Rob's dad died when he was in his early teens so Rob had experience of what being a good dad was, and he does it brilliantly. Our children adore him, Georgi smiles as soon as he walks into a room and Josh jumps all over him!
I cant tell you how much I love him, it's hard to put that amount of love into words.
He is the only man I know that can sit and eat a pack of 12 minced pies with 4 pints of milk and have no consequences, apart from little puffs of Christmas the next day (his words, not mine). He is also the only man that can be as rude to my mum as he is to me and get away with it. They lived together when I was in hospital with Georgi, so now they call each other Roomies.
If I ever have a problem, I call my mum. I speak to her every day. She is another person I could not live without. So it's a good thing she gets on well with Rob!
When Georgia was ill I never showed anyone how hard I truly found it apart from her, she is and always will be my support, I sometimes thought I was leaning on her a bit too much. I would phone her in tears, but bless her, I know she was thinking that being miles away she couldn't help, but she did, just by listening. When I was in labour with Georgi mum nipped out of the room to phone someone just as I needed to push! We had to get the midwife to track her down while I was trying to stop pushing! Don't worry though, she didn't miss it.
That is the thing about my mum, she never misses it, ever. She was there when Josh was born, she was there when we got married, she was there when Georgia came into the world and she was there when Georgia nearly left it again.
The other thing you should know about my mum is she is a complete numpty. Her texting ability is second to none, she blames it on having 'fat fingers and a touch screen phone', I blame it on her numptiness. She makes me laugh, especially when she texts me saying she 'has pissed my blog all round the office'...........'PASSED, I MEAN PASSED'
When I told my Mum and Marc about Georgia's condition they were devastated and have done everything they possibly could to support us.
Rob's mum has been wonderful too. She works in Southampton so when Georgia was on the Ocean Ward she would come straight from work to keep me company. Some Saturdays she went over there to give me a day off to see Josh and Rob. She spends every weekend with us now, which I enjoy as she was there through the good and the bad, it is good to talk to her about the hospital bit.
Georgia is a lucky girl to have all these wonderful people in her life.
How am I supposed to breathe with no air?
I still have moments of pure panic, I had one this morning in fact when I read a blog from the Island defending the closure of the Ocean Ward. Many people have argued the case but it was the first time I had read the defence saying 'if this ward is closed then many heart children from the island will die'.
When Georgia was diagnosed right up until her heart surgery we were waiting. Waiting for the surgery or waiting for her to die. I know it sounds dramatic but being in that position, it was just how we felt. Since her surgery I have felt slightly more secure but when I think about it too much she is still really ill and there is every chance she could die. I always get my head into the worst case scenario, it's kind of a self preservation thing, if the worst happens I am ready but if it's good news then I am overjoyed. Saying that, are you ever ready to lose a child? Anyway reading this article my stomach lurched, if they move this ward and something happened like before would we have time to get her miles away to a specialist hospital? Southampton is far enough and the journey there with a poorly child is petrifying.
So in the middle of May, almost a year to the day, Georgia started to have really bad breathing problems. Every time we gave her a feed her breathing got really laboured and her chest rattled, normally this would be solved by her vomiting but this was not working anymore.
On top of Georgia starting to get really ill we had really bad financial difficulties and were not able to keep up with our bills and mortgage, safe to say we were in hell.
The phone call for the surgery came 2 weeks after her bad breathing began, they had booked her in for the 13th June so we had to be there the day before to get her prepped. This was weird news, although we were pleased it terrified us both. We were also a bit annoyed as her surgery had been booked for the weekend of the Isle Of Wight Festival, not that we wanted to go, the ferry would be packed out, full of muddy hippies!
A week before she was booked in for surgery I had been up all night with her. Georgia's breathing was so bad that I could hear it through the baby monitor. I stayed in her room all night watching her little chest rise and fall, listening to her rattling breathing. Honestly i was waiting for it to stop, by this point I thought the poor girl was struggling so much that she deserved a break. Sitting in her room that night is one of the only times I regretted our decision to continue the pregnancy, I know we have no right to play god or not let her fight for life but I never realised how hard she would have to fight.
At 5am she started to cry, any mother knows the difference between the moany cry and the pain cry, this was a pain cry. I had never heard anything so awful, she was in pain but was too tired to put the effort in, at this point I called the hospital for advice. The nurse I spoke to said to take her up to the ward if I was worried, after I hung up the phone Georgia went back to sleep in my arms, I didn't want to wake her so I thought I would stay at home until she woke up and see how she was then. Ten minutes later she woke up crying again, this time I knew something was wrong and called 999. While I was on the phone to them with Georgia still in my arms she went limp, I looked down and she had gone blue and her eyes had rolled back into her head. I remember saying to the emergency services 'where is the bloody ambulance?' she replied by saying 'it's on it's way' and i shouted 'i find that hard to believe, we are a small island, i should hear sirens by now!' Poor woman, I feel bad now! On arrival, as ever, the paramedics were wonderful. I had placed Georgia on the floor and tilted her neck to open her airway, they swooped in and took her off to the ambulance for some oxygen, still unconscious. Stupid me just stood there. I didn't know what to do. One of the paramedics came back in he suggested I follow in my car. Dumbstruck I asked if I needed to take anything for Georgia, I didn't even know if she was still alive. She was, she had gone into respiratory arrest. Our local hospital put it down to her heart being to stressed.
The surgery couldn't come quick enough.
When Georgia was diagnosed right up until her heart surgery we were waiting. Waiting for the surgery or waiting for her to die. I know it sounds dramatic but being in that position, it was just how we felt. Since her surgery I have felt slightly more secure but when I think about it too much she is still really ill and there is every chance she could die. I always get my head into the worst case scenario, it's kind of a self preservation thing, if the worst happens I am ready but if it's good news then I am overjoyed. Saying that, are you ever ready to lose a child? Anyway reading this article my stomach lurched, if they move this ward and something happened like before would we have time to get her miles away to a specialist hospital? Southampton is far enough and the journey there with a poorly child is petrifying.
So in the middle of May, almost a year to the day, Georgia started to have really bad breathing problems. Every time we gave her a feed her breathing got really laboured and her chest rattled, normally this would be solved by her vomiting but this was not working anymore.
On top of Georgia starting to get really ill we had really bad financial difficulties and were not able to keep up with our bills and mortgage, safe to say we were in hell.
The phone call for the surgery came 2 weeks after her bad breathing began, they had booked her in for the 13th June so we had to be there the day before to get her prepped. This was weird news, although we were pleased it terrified us both. We were also a bit annoyed as her surgery had been booked for the weekend of the Isle Of Wight Festival, not that we wanted to go, the ferry would be packed out, full of muddy hippies!
A week before she was booked in for surgery I had been up all night with her. Georgia's breathing was so bad that I could hear it through the baby monitor. I stayed in her room all night watching her little chest rise and fall, listening to her rattling breathing. Honestly i was waiting for it to stop, by this point I thought the poor girl was struggling so much that she deserved a break. Sitting in her room that night is one of the only times I regretted our decision to continue the pregnancy, I know we have no right to play god or not let her fight for life but I never realised how hard she would have to fight.
At 5am she started to cry, any mother knows the difference between the moany cry and the pain cry, this was a pain cry. I had never heard anything so awful, she was in pain but was too tired to put the effort in, at this point I called the hospital for advice. The nurse I spoke to said to take her up to the ward if I was worried, after I hung up the phone Georgia went back to sleep in my arms, I didn't want to wake her so I thought I would stay at home until she woke up and see how she was then. Ten minutes later she woke up crying again, this time I knew something was wrong and called 999. While I was on the phone to them with Georgia still in my arms she went limp, I looked down and she had gone blue and her eyes had rolled back into her head. I remember saying to the emergency services 'where is the bloody ambulance?' she replied by saying 'it's on it's way' and i shouted 'i find that hard to believe, we are a small island, i should hear sirens by now!' Poor woman, I feel bad now! On arrival, as ever, the paramedics were wonderful. I had placed Georgia on the floor and tilted her neck to open her airway, they swooped in and took her off to the ambulance for some oxygen, still unconscious. Stupid me just stood there. I didn't know what to do. One of the paramedics came back in he suggested I follow in my car. Dumbstruck I asked if I needed to take anything for Georgia, I didn't even know if she was still alive. She was, she had gone into respiratory arrest. Our local hospital put it down to her heart being to stressed.
The surgery couldn't come quick enough.
Wednesday 18 May 2011
Stares and Smiles
So life goes on, the day to day care for Georgia was getting easier once we were used to it. The vomiting started becoming normal to us.
One struggle I had, which I really didn't think would be a problem, was her medication and milk. I had to get repeat prescriptions from her GP for both. The problem started the moment I put the first prescription in, we had a phone call from our doctor asking us what the strength of the medication should be! If he asked me that now I could reel them off easily but being new to the whole thing I didn't have a clue, unfortunately neither did he. After a lot of calling community nurses and wards I finally found out the dilution of each individual medicine (mgs to mls) and called our doctor back with the info. He then advised me that the strength I was requesting is only available to inpatients at the hospital therefore I would be given a more diluted version so the dosage would change. Being a newbie to all this I just agreed with him and said I would just read the bottles when I picked them up, after all he is the health professional not me.
The problem started there, on picking up the meds he had given us 5 times the amount Georgia was used to taking, with a vomiting child you try to keep the amount you put into their tummy to a minimum. Also the milk he had prescribed was in drip bags, bloody drip bags! 500mls of milk that only had a shelf life of 24 hours (and even that was pushing it) so we were wasting so much of the stuff, not to mention the trouble we had if we ever went out anywhere, having to carry all the drip bags with us. I don't know if you have ever tried to open a drip bag but it is really hard, especially when its 2am and you can hardly function.
Anyway this was the beginning of my long hard battle against my GP, I saw him over 8 times in a month to request these meds to be sorted, it finally took for Southampton to phone him and give him the details for them to be changed. In between all of this Georgia had been in and out of St Marys with problems that the meds brought with them, as there was so much of them she often vomited them then would puff up like a little blowfish with water retention.
I probably should mention that Georgia seems to get a chest infection every 2 weeks and has been on antibiotics for most of her life too, this was another reason we were in hospital a lot. It seems strange that it became my normal life. I remember calling 999 and being really calm, driving up to the hospital with her at 3am and being pleased that it was that early so there was no traffic! The amount of hours I sat in the hospital with her while she was being poked and prodded, the blood tests, the urine tests, the x rays of her chest and all the while she was smiling!
Rob and I pretty much never went anywhere in case of any problem with Georgia in the first month she was home but it was so unfair on Josh so we decided to risk it and go out for the day. Looking back now I am horrified we chose the most deserted park on the other side of the island to the hospital, and to top it off we both forgot to take our mobiles! Idiots! That said though, we had a lovely day with them both and Josh was overjoyed that he finally got to go to the park with Wheeze and show her the swings. After we had been to the park we went to a little cafe to have lunch and to feed Georgia. People are funny, the stares she used to get for her feeding tube. Very few people would come over and ask us about it, i found children (with their innocence) were usually the ones to ask. Honestly, I liked people to ask us, instead of pretending not to be staring. One lovely man in Sainsbury's came over to Georgia and I and asked me why such a beautiful little girl had to have a feeding tube. It's not taboo, it is just a feeding tube and I was always more than happy to talk about Georgia's condition, in a way it was a kind of therapy for me as it helped me to get my head round it.
Josh was (and still is) a little treasure. If I had left the room and Georgia was sick he would come and tell me, a few times he even helped clear it up, bless him. He understood that Georgia was ill, I often had to take him with me to the hospital when she was there and Rob was at work. Still to this day when we drive past the hospital he says 'that's where Wheezy lived'. It makes me sad sometimes to think that both of them have been exposed to this world of illness and hospitals.
I know Georgia's condition is not hereditary but I worry that in the future one of them might have to go through what we have and watch their child suffer, I really hope that never happens, they have had enough sadness.
In March we had an appointment to go back to Southampton to see the Cardiologist (Dr Roman) for a heart echo to check on how she was coping. At the appointment he told us that she was not coping as well as he expected and would want to do the surgery as soon as possible, but her weight was against her, she still needed to gain more. So back to the Island we came, feeling a little bit like we had failed in getting her to gain weight. It took another month for her to get to the right weight for surgery. Now we had to just sit and wait for the phone call to tell us when the surgery would be. We were dreading it, we knew she had to have it but apart from the vomiting she seemed so well. Then everything changed within a few days.
One struggle I had, which I really didn't think would be a problem, was her medication and milk. I had to get repeat prescriptions from her GP for both. The problem started the moment I put the first prescription in, we had a phone call from our doctor asking us what the strength of the medication should be! If he asked me that now I could reel them off easily but being new to the whole thing I didn't have a clue, unfortunately neither did he. After a lot of calling community nurses and wards I finally found out the dilution of each individual medicine (mgs to mls) and called our doctor back with the info. He then advised me that the strength I was requesting is only available to inpatients at the hospital therefore I would be given a more diluted version so the dosage would change. Being a newbie to all this I just agreed with him and said I would just read the bottles when I picked them up, after all he is the health professional not me.
The problem started there, on picking up the meds he had given us 5 times the amount Georgia was used to taking, with a vomiting child you try to keep the amount you put into their tummy to a minimum. Also the milk he had prescribed was in drip bags, bloody drip bags! 500mls of milk that only had a shelf life of 24 hours (and even that was pushing it) so we were wasting so much of the stuff, not to mention the trouble we had if we ever went out anywhere, having to carry all the drip bags with us. I don't know if you have ever tried to open a drip bag but it is really hard, especially when its 2am and you can hardly function.
Anyway this was the beginning of my long hard battle against my GP, I saw him over 8 times in a month to request these meds to be sorted, it finally took for Southampton to phone him and give him the details for them to be changed. In between all of this Georgia had been in and out of St Marys with problems that the meds brought with them, as there was so much of them she often vomited them then would puff up like a little blowfish with water retention.
I probably should mention that Georgia seems to get a chest infection every 2 weeks and has been on antibiotics for most of her life too, this was another reason we were in hospital a lot. It seems strange that it became my normal life. I remember calling 999 and being really calm, driving up to the hospital with her at 3am and being pleased that it was that early so there was no traffic! The amount of hours I sat in the hospital with her while she was being poked and prodded, the blood tests, the urine tests, the x rays of her chest and all the while she was smiling!
Rob and I pretty much never went anywhere in case of any problem with Georgia in the first month she was home but it was so unfair on Josh so we decided to risk it and go out for the day. Looking back now I am horrified we chose the most deserted park on the other side of the island to the hospital, and to top it off we both forgot to take our mobiles! Idiots! That said though, we had a lovely day with them both and Josh was overjoyed that he finally got to go to the park with Wheeze and show her the swings. After we had been to the park we went to a little cafe to have lunch and to feed Georgia. People are funny, the stares she used to get for her feeding tube. Very few people would come over and ask us about it, i found children (with their innocence) were usually the ones to ask. Honestly, I liked people to ask us, instead of pretending not to be staring. One lovely man in Sainsbury's came over to Georgia and I and asked me why such a beautiful little girl had to have a feeding tube. It's not taboo, it is just a feeding tube and I was always more than happy to talk about Georgia's condition, in a way it was a kind of therapy for me as it helped me to get my head round it.
Josh was (and still is) a little treasure. If I had left the room and Georgia was sick he would come and tell me, a few times he even helped clear it up, bless him. He understood that Georgia was ill, I often had to take him with me to the hospital when she was there and Rob was at work. Still to this day when we drive past the hospital he says 'that's where Wheezy lived'. It makes me sad sometimes to think that both of them have been exposed to this world of illness and hospitals.
I know Georgia's condition is not hereditary but I worry that in the future one of them might have to go through what we have and watch their child suffer, I really hope that never happens, they have had enough sadness.
In March we had an appointment to go back to Southampton to see the Cardiologist (Dr Roman) for a heart echo to check on how she was coping. At the appointment he told us that she was not coping as well as he expected and would want to do the surgery as soon as possible, but her weight was against her, she still needed to gain more. So back to the Island we came, feeling a little bit like we had failed in getting her to gain weight. It took another month for her to get to the right weight for surgery. Now we had to just sit and wait for the phone call to tell us when the surgery would be. We were dreading it, we knew she had to have it but apart from the vomiting she seemed so well. Then everything changed within a few days.
Monday 9 May 2011
The glam life of a mum!
When Josh was born I was completely out of my comfort zone. I constantly moaned about the lack of freedom, the worst thing to me was the fact I couldn't get a whole night of sleep without having to get up for a feed. It seems laughable now, looking back I was so naive to think having children is just something people do with ease. I am glad Josh was a nightmare for 6 months, he had colic, he never slept and to add to it whenever I left a room he screamed. I personally think he knew what was to come and was preparing us for it! That said, after 6 months he was a little delight, my little blonde bombshell.
Once Georgia came home from the hospital everything changed. Now our whole existence revolved around this little bundle.
We were lucky that Georgia was a good weight when she was born (8lb 8oz) so we now had the task of not only maintaining that weight but getting her to increase it to be big enough for the heart surgery. I am ashamed to admit that this took over my every waking moment. She had to be fed every 3 hours, she had to have her medications too, on top of that i had to daily change the tape that was holding her feeding tube to her face as she was a monkey and kept trying to pull it out.
She started vomiting 2 weeks after we got her home. I took her up to our local hospital to be looked at in case of any problems with her bowel. Our lovely consultant, Dr Whaley, told us this was going to be a frequent occurrence with Georgia. She was struggling with digesting her food due to her heart, she was getting tired and the only way for her to feel better was to get rid of the food she didn't want. I took for granted the fact that Josh easily digested food, poor Georgia had a feeding tube so she couldn't just stop drinking. We tried lots of things, small and often, a lot but further apart, break in the night, break in the day, but all of it had the same result, vomit. I tried her with bottles to see if she would drink until she was full but she was not interested. I tried feeding her in the dark, in the light, with every teat you can imagine, different bottles, different milk, flavoured milk, i even tied hair bobbles round the bottle to see if that would keep her interested but with no joy. It was so frustrating.
One night rob was doing the 2am feed when he saw she had vomited out her feeding tube, I know it sounds gross but I didn't even think of the yukkiness of the situation, my first thought was 'it's 2am, she has no tube and I have to feed her'. By this point my anxiety grew if I couldn't feed her on time, I was obsessed. I didn't want to take her out of bed up to the hospital so I phoned Matt. Matt is luckily a paediatric nurse and bless him he said he would be straight round. I picked Georgia up out of her moses basket and realised the tube was only out a small way so I took a deep breath in and fed it back up her nose, then I got a syringe and checked the tube, sure enough it was in her tummy...............relief. I then phoned Matt and apologised for waking him up and said I had solved it!
Georgia's digestion was so slow that the tiny amount of milk that I would feed her would mostly still be in her tummy when we came to feed her 3 hours later. My washing machine was working overtime to clean all the tea towels and muslins that we had to cover her in to catch the sick!
Its strange when I write it down I remember how horrifying it was. I never wanted to leave her in a room on her own in fear of her being sick and choking. I hated sleeping, when I woke up my stomach would be turning as I looked into her moses basket to see if she had survived the night. Most nights I just sat watching her in fear. I wished she could tell me what was happening, I felt so helpless.
On a happier note I should explain the wonderful Matt to you. My uncle, although more like a brother, as I said is a paediatric nurse. I thank Georgia for bringing Matt so much closer to us. I can never thank him enough for the times he put her tube back in or came round when I was freaking out, just his presence was reassuring. He walked up and down our living room for hours with her when she was screaming in pain, trying to soothe her and give me a break. So there you have it, Matt is an angel and has been there without fail every time we needed him, and still is to this day!
Once Georgia came home from the hospital everything changed. Now our whole existence revolved around this little bundle.
We were lucky that Georgia was a good weight when she was born (8lb 8oz) so we now had the task of not only maintaining that weight but getting her to increase it to be big enough for the heart surgery. I am ashamed to admit that this took over my every waking moment. She had to be fed every 3 hours, she had to have her medications too, on top of that i had to daily change the tape that was holding her feeding tube to her face as she was a monkey and kept trying to pull it out.
She started vomiting 2 weeks after we got her home. I took her up to our local hospital to be looked at in case of any problems with her bowel. Our lovely consultant, Dr Whaley, told us this was going to be a frequent occurrence with Georgia. She was struggling with digesting her food due to her heart, she was getting tired and the only way for her to feel better was to get rid of the food she didn't want. I took for granted the fact that Josh easily digested food, poor Georgia had a feeding tube so she couldn't just stop drinking. We tried lots of things, small and often, a lot but further apart, break in the night, break in the day, but all of it had the same result, vomit. I tried her with bottles to see if she would drink until she was full but she was not interested. I tried feeding her in the dark, in the light, with every teat you can imagine, different bottles, different milk, flavoured milk, i even tied hair bobbles round the bottle to see if that would keep her interested but with no joy. It was so frustrating.
One night rob was doing the 2am feed when he saw she had vomited out her feeding tube, I know it sounds gross but I didn't even think of the yukkiness of the situation, my first thought was 'it's 2am, she has no tube and I have to feed her'. By this point my anxiety grew if I couldn't feed her on time, I was obsessed. I didn't want to take her out of bed up to the hospital so I phoned Matt. Matt is luckily a paediatric nurse and bless him he said he would be straight round. I picked Georgia up out of her moses basket and realised the tube was only out a small way so I took a deep breath in and fed it back up her nose, then I got a syringe and checked the tube, sure enough it was in her tummy...............relief. I then phoned Matt and apologised for waking him up and said I had solved it!
Georgia's digestion was so slow that the tiny amount of milk that I would feed her would mostly still be in her tummy when we came to feed her 3 hours later. My washing machine was working overtime to clean all the tea towels and muslins that we had to cover her in to catch the sick!
Its strange when I write it down I remember how horrifying it was. I never wanted to leave her in a room on her own in fear of her being sick and choking. I hated sleeping, when I woke up my stomach would be turning as I looked into her moses basket to see if she had survived the night. Most nights I just sat watching her in fear. I wished she could tell me what was happening, I felt so helpless.
On a happier note I should explain the wonderful Matt to you. My uncle, although more like a brother, as I said is a paediatric nurse. I thank Georgia for bringing Matt so much closer to us. I can never thank him enough for the times he put her tube back in or came round when I was freaking out, just his presence was reassuring. He walked up and down our living room for hours with her when she was screaming in pain, trying to soothe her and give me a break. So there you have it, Matt is an angel and has been there without fail every time we needed him, and still is to this day!
Friday 6 May 2011
Just Panic
There never seems to be enough said about the nurses that work on these wards and how amazing they are. I loved every one of them, which is lucky as you are in essence trusting them to look after your poorly little baby when you are not there!
I watched one particular nurse, Ruth, take Georgia’s feeding tube from her nose and insert a new one with such care that she didn’t even wake her up!
Georgia had so much fluid on her lungs that they constantly had to suction it for her too, I was starting to wonder how on earth I was going to cope at home without them being there.
They trained me on how to give her feeds to her down the tube involving aspirating (pulling back on the syringe) to check on litmus paper (acid checking) if the tube was still in her tummy before I put the milk down. I then had to clean the tube through with water. All this had been calculated by them too, as she was fluid restricted. I was trained on how to give her medications, also down the tube.
My thoughts at this point were in complete chaos. What if the tube comes out? What if she vomits and I don’t know how much milk she has had, or medication? Panic started to set in.
In the middle of all this panic Josh was back at home after my mum dropped him off. It was so good to see him, we had both really missed him, but that was the first of many breakdowns for me!
At the time my uncle Matt was tiling our bathroom for us, mum had just brought Josh in and I was unpacking his things in his room. I remember how I felt but its very hard to describe. I try very hard to look on the bright side of things but this really only makes me bottle things up, I hadn’t realised I was doing that, I started to get annoyed trying to get this bloody stair gate up and all of a sudden just sat in the middle of the floor and burst into tears. I felt Matt sit next to me and just hug me until I stopped crying. I mainly remember Matt saying ‘Kate, you are allowed to cry’. He was right of course.
I am not sure how we managed really. Rob had to stay at home and look after Josh and I spent everyday travelling over to be with Georgia. They do have accommodation for you to stay in over in Southampton but there are so many patients that come from all over the UK, we lived relatively close compared to most.
Although we lived close the lack of work for Rob and the travelling for me cost us dearly in the end, this was the start of a very long journey financially. Our mortgage was with Northern Rock (boo hiss) and they had just had their big downfall, therefore in fact as the company was publicly owned then, we owned it! Still not once did they offer us any help, I applied to their ‘Special Case Team’ and was promptly called back by them to be told that because Georgia was not terminally ill they cant help us. How did they know it wouldn’t be terminal? I suppose if Georgia had died we would still be allowed to keep our house, but then what is the point if all the smiles have gone from it?
So it’s safe to say that I think Northern Rock deserve to lose the public backing!
I am sure there are thousands of people out there that this has happened to but it shouldn’t be allowed. We didn’t lose our house for a long time after Georgia’s first surgery but every step was hard, it is horrible worrying every time the phone rings or when someone knocks at the door. We were tied into our mortgage so tightly that even if we had been repossessed we would still owe them 36 thousand pounds.
So I went to pick up Georgia from the hospital with Matt, totally petrified that I couldn’t cope with it all. Little did I know that the hardest part of our lives was just about to begin and that it would lead us to more wonderful people.
I watched one particular nurse, Ruth, take Georgia’s feeding tube from her nose and insert a new one with such care that she didn’t even wake her up!
Georgia had so much fluid on her lungs that they constantly had to suction it for her too, I was starting to wonder how on earth I was going to cope at home without them being there.
They trained me on how to give her feeds to her down the tube involving aspirating (pulling back on the syringe) to check on litmus paper (acid checking) if the tube was still in her tummy before I put the milk down. I then had to clean the tube through with water. All this had been calculated by them too, as she was fluid restricted. I was trained on how to give her medications, also down the tube.
My thoughts at this point were in complete chaos. What if the tube comes out? What if she vomits and I don’t know how much milk she has had, or medication? Panic started to set in.
In the middle of all this panic Josh was back at home after my mum dropped him off. It was so good to see him, we had both really missed him, but that was the first of many breakdowns for me!
At the time my uncle Matt was tiling our bathroom for us, mum had just brought Josh in and I was unpacking his things in his room. I remember how I felt but its very hard to describe. I try very hard to look on the bright side of things but this really only makes me bottle things up, I hadn’t realised I was doing that, I started to get annoyed trying to get this bloody stair gate up and all of a sudden just sat in the middle of the floor and burst into tears. I felt Matt sit next to me and just hug me until I stopped crying. I mainly remember Matt saying ‘Kate, you are allowed to cry’. He was right of course.
I am not sure how we managed really. Rob had to stay at home and look after Josh and I spent everyday travelling over to be with Georgia. They do have accommodation for you to stay in over in Southampton but there are so many patients that come from all over the UK, we lived relatively close compared to most.
Although we lived close the lack of work for Rob and the travelling for me cost us dearly in the end, this was the start of a very long journey financially. Our mortgage was with Northern Rock (boo hiss) and they had just had their big downfall, therefore in fact as the company was publicly owned then, we owned it! Still not once did they offer us any help, I applied to their ‘Special Case Team’ and was promptly called back by them to be told that because Georgia was not terminally ill they cant help us. How did they know it wouldn’t be terminal? I suppose if Georgia had died we would still be allowed to keep our house, but then what is the point if all the smiles have gone from it?
So it’s safe to say that I think Northern Rock deserve to lose the public backing!
I am sure there are thousands of people out there that this has happened to but it shouldn’t be allowed. We didn’t lose our house for a long time after Georgia’s first surgery but every step was hard, it is horrible worrying every time the phone rings or when someone knocks at the door. We were tied into our mortgage so tightly that even if we had been repossessed we would still owe them 36 thousand pounds.
So I went to pick up Georgia from the hospital with Matt, totally petrified that I couldn’t cope with it all. Little did I know that the hardest part of our lives was just about to begin and that it would lead us to more wonderful people.
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