Thursday, 30 July 2015

Wednesday 2nd day on ICU

Overnight they tried a couple of times to again extubate George but her blood gases went mad and her body simply wouldn't allow it so her situation remained the same. 

The lovely staff at Harefield saved George's room on oak ward for us to use while she was in ICU, George has a very close family who all love her dearly so the ones living further away came down as soon as they knew the situation and my sister literally stepped off a plane to Turkey and turned around and came back home. Overnight the staff told us to use the room and they were happy to make tea and toast if anyone needed it. 

Waiting for news is the hardest part, knowing that the surgeons and transplant team are having meetings you just want some information straight away so when Dr Carby came for a chat it was a relief to get an update. 

He is a lovely Dr and very direct, George has always respected that he gives it to  you straight so you know exactly what you are facing. He went over the events of the previous day and said that as she was now reliant on a ventilator that the only option open to her now is a transplant. Although she is stable at the moment the problems the stent is causing with blood flow and pressure in her heart is being closely monitored along with her liver, also being on a ventilator can stir up her lungs and lead to increased infection and if that happens and she gets a temperature then transplant won't be an option. He explained that due to George's size it has always been unlikely that she would find suitable lungs to fit her tiny frame so transplanting lobes is the most likely outcome and also as she is in such a critical situation now they will be concidering organs that might previously have been rejected, we are quite simply running out of time. We asked if the stent would be delt with during transplant and he said at that point it would no longer be a problem the surgeon would simply put his finger in and pull it out as all the "plumbing" will be exposed and it's easily sorted.
Visitors are restricted to close family which to George means quite a large group so we keep rotating during visiting times. We have been told to keep talking to her as she can hear what we are saying which at first was a bit strange especially with total strangers in the room  but you get over that fast. During a visit from lee he was chatting away and she started to respond and wave her hands around so the ICU team adjusted her sedation and asked if she wanted to try to communicate with us, she gave us the thumbs up and we then had an hour where she tried her best to let us know how she's was feeling. She wasn't in any pain and knew where she was and we gently explained that she was on a ventilator which she kept pulling at to show she didn't like it. As George has been on the transplant list for a while she has given Lee and myself very clear instructions on what she does and doesn't  want ( no surprise to those who know her!) and one was that while she is sedated we play her reggae music so we asked staff and they said fine and put her phone playing on her pillow, for the next 5 minutes she was clearly not happy and we all, including the staff set about trying to find the problem it turns out the music was driving her mad so was quickly turned off which left us all smiling. A few times she smiled through tubes and gave us thumbs up and down to some questions she even flexed her arm to show her muscles and then gave us the thumbs up to say that she's is still strong which made us laugh and cry, George is still there under all the fog of drugs and continues fighting hard. A few times she tried spelling out words on my hand which I just couldn't understand and I know once she's through all this she will be telling me off for that. She wrote a word on a board held up to her 'uncle preps' and tried very hard to write something for her sister Libby when she knew she was upset but she was just too exhausted by this time to manage it so her sedation was increased to allow her to rest.
The ICU team have said this is a very good sign that she is fighting through all the drugs and they also did fresh blood gases while we were there that were also normal so tomorrow before they resort to a tracheotomy which will be irreversible they are going to have one last try to extubate her and see if she can hold her own. 
The ICU staff although very busy have been so lovely explaining everything to us and have said they know how loved she's is by all the visitors she has, she  even had 3 visits from the staff on oak ward to see how she's is and her lovely nurse Emmy from Frimley has phoned me to send her love and ask how she is. All the messages we are receiving  from friends and well wishers makes such a difference we know how special George is to us and how much we love her, seeing how much she is loved by others brings so much comfort during tough times. It will be lovely for her when she gets through this and has a chance to read everyone's kind words.xxxx


  1. Just wanted to send some love and hugs via a friend of George x

  2. So great to hear that the little fighter has still got spunk! She is very fortunate to have you and such a big, loving family to see her through this tough time. Sending love and hugs! Xx

  3. Thinking of you all and praying for these lungs to hurry up, George is an amazing little inspiration and such a tough cookie. Well done for keeping up with her blog to keep everyone updated and so that she can read up on it all when she comes out! xx

  4. Sending all of our love to all of your family💕💕💕 come on George - we are all rooting for you here 💕💕💕

  5. A true fighter- wouldn't expel anything else from my pint sized super hero!
    Love to you all

  6. What an amazing fighter and inspiration, with a wonderful family.

  7. Thank you for taking time to post an update at this time. I can't imagine how you are all feeling. I pray her strong fighting spirit will see her through this as quickly as possible.
    As the comments above habe said she is a true inspiration, it is down to her blog alone that I have signed up for my donor card & am involved with the CF charity. Sending love, hugs & hope x

  8. Yes, thank you for taking the time to update! Keep it up George, you can fight this! You sound so much like my Anna', headstrong and knowing what she does and does not want. Keep it up, you can do it! Sending prayers from afar.