Wednesday, 29 July 2015

My Little Hero - by George's mum



George asked me when she first went on the transplant list to update her blog while she was unable to do so as this is very much her own diary of her transplant journey. So I hope my posts do her proud and fill the gaps while she's busy fighting hard through this. 
Tuesday morning at Harefield George had a visit from one of the lovely cardiac surgeons who explained that he was going to attempt to retrieve the stent that had found its way into her heart, typically first questions George asked were can I have a general anaesthetic and can you take pictures for me followed closely by if you get it out can I keep it! The surgeon was very much on George's wavelength and said absolutely and as they would be filming it she could have the cd too, as you can imagine George was delighted with this news and the cardiac surgeon was her new best friend.
The rest of the morning was spent getting ready for surgery and having fun laughing at the paper knickers she was given, they only come in one size which is enormous! 

Lee and I were allowed to take her right down to the theatre she was going to and the surgeon met us there and explained that while it was important to remove the stent that if at any time her body showed any sign that it wasn't coping they would stop and try again, her welfare was the most important thing to them. So a very relaxed and happy George took some selfies of us all and was then taken off for the procedure to start this was 2.15.


At 5pm her surgeon came to see us in her room and we knew straight away he was about to give us bad news. The stent had found its way into a valve between her heart chambers and was stuck fast and despite  his best efforts he could not remove it, George's left ventricle had also started to show signs that it was not happy so as he said earlier George's welfare was the most important factor here so they aborted the procedure. He did however have a good look at the situation and it wasn't good, the stent was covered in clots and the valve it was holding open was allowing blood to travel the wrong way back into her right atrium and to her liver. He said she was still aneathiatised to let her body recover and she would be back on the ward later. He explained there were now 3 options open for her as this was now a critical situation, they could try again to pull it through a vein with cardiac surgeons ready to take over open heart surgery if things went wrong, go straight for open heart surgery or leave alone and put her on an urgent call out for lungs. As you can imagine we were gutted, all the options were highly dangerous for George .
Lee,  my sister Pamela and myself waited for news she was awake and we could see her. After several hours a nurse came to explain that they had been unable to extubate George from a ventilator as her lungs were just not strong enough to cope by themselves anymore. This was always a risk George was aware of when having an anaesthetic but as she had sailed through being aneathiatised twice in the last few weeks she was not concerned this time. We were then  taken to ICU to see George, she was in her own room with 3 dedicated nurses looking after her, seeing someone you love in this situation for the first time is heartbreaking and I will never forget the feeling of total helplessness.

Visiting times in ICU are quite restricted as George is quite rightly their priority but like many CF mums George and I have been through everything she's had to cope with together holding hands through the toughest procedures and reassuring her everything will be ok so emotionally this is hard, no matter how old she is my little girl and I just want to hold her hand and tell her everything will be ok. it breaks my heart to leave her I just feel so helpless. Lee has quite simply been amazing he has been such a great support to George and can always make her smile. Spending this much time with your mother in law would send most husbands mad but lee has been there for George and me and kept me strong and I will be forever grateful for him for that xx

11 comments:

  1. Big ((((HUGS)))) and prayers for all of you. You are all amazingly brave.

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  2. Keeping fingers crossed for George, she's always been a fighter xxx

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  3. Thinking of you all in this difficult time, mum sends her love too xx

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  4. A lovely update- and I know exactly what G would want. She is always up for awareness and has been amazingly strong delivering these updates on a regular basis. Showing us all the ins and outs, good and bad- it's incredibly important and she is a real inspiration for all her cf brothers and sisters.
    I'm thinking of you G! Xxx

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  5. I only knew George from Salesian school but always kept up to date with her blog. She has such an inspirational attitude towards life even though life hasn't been the fairest to her. I read lees status last night which was shared through Facebook and felt sad with what I was reading. I feel so hopeless and am not in a position to help much but I have signed myself up on the donors list which I hope can help someone else further down the line. George I'm thinking of you & your loving family. Sending lots of love and prayers to you all. Love Pia Brouer x

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  6. I really hope things improve for you all. Stay strong.

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  7. I am a CF mum and I was so deeply touched by this post. My Love And support go out to you all. I am thinking of you often since I first read about George. hang in there you tough little cookie! xo

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  8. Thinking of you and your family and sending all the well wishes I can, your way. I've kept up to date with your blog and had really hoped Kalydeco would make a huge difference to your health. Now hoping so much that you get your new lungs. Stay strong and keep fighting! You're a force to be reckoned with...just keep it up a little bit longer until those lungs arrive! Love, Asha xx

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  9. Hello, I am a mom from the U.S. that has been following along since coming across your blog on Pinterest. I have 2 daughters with CF. My youngest just turned 25 last month. I want to say that you, George, are in my prayers. I check in every few days in the hopes of seeing the wonderful news that your perfect lungs have been found. I have not read on to the next entry yet, I pray that there is good news to see. Either way, you and your family are in my prayers. I pray that the family of your perfect match makes that life giving decision soon and that they say yes. Get better so you can get those lungs! Sending hugs from this U.S. mom.

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