Dr Rosenberg one of the ICU Drs asked for a chat and filled us in on George's next options. They are very concerned about the secretions in her lungs as they are building up while she is sedated and on ventilation. The worst thing you can do if you have CF at any stage is lay static for days on end and at George's stage of lung damage this could be really serious which is why they were trying to wake her or give her a tracheotomy. Unfortunately as the day wore on George's secretions despite suction we're causing her body to go into some sort of spasam and these we're happening at increasing intervals so the Dr started explaining that the next stage could be echmo where an external machine would take over from her heart and lungs. Lee and I went back to see George several times and each time we did she had another episode and we were taken away so the team could work on her. They let us stay later on ICU as she was in a bad way and we eventually left at 10pm after being given cards with direct lines to ICU so we could call at any time.
For the first time I found I couldn't hold it together and was quite honestly a quivering wreck, I don't know what I would have done without Lee, he took control and asked all the right questions. They were increasing George's sedation further to try and stop the spasms she was having as she still has a stent wedged in her heart. So we went home hoping that the best outcome was that she would be stable enough to have the tracheotomy the next day. But all of us without actually voicing it were so worried that she might not be able to hang in there much longer
Lee got to the ward first next day and phoned me to say we couldn't go to see her for a while as she was having physio, that was all they said so we just assumed they were working on her muscles to keep them moving.
Next call came that she was awake and ready to see us! We couldn't get to the ward quick enough and we walked through the doors to see her beaming at us.
She went from smiling to crying to smiling again and wanted to know in her words 'what the f*#%k happened to me' so we filled her in, she couldn't believe it was Friday and asked how she got to harefield as she tried to convince us she went off to have surgery at Frimley hospital and we were idiots to think she had it at harefield. She told my sister off for coming home from Turkey and wanted to see everyone, even told the staff she wanted to see my nieces baby Seb she didn't care what the ICU rules were. It is lovely to have our George back! At this point through all the emotion we realised she was talking, which we were warned she couldn't do immediately with a tracheotomy and then found out she had actually been stable enough to have her velitator removed, it was the best outcome we could have hoped for. Probably makes us sound very stupid not to notice there was no tube in her throat but it was a highly emotional time.
Her lovely nurse took me to one side and said to be cautious about her being off the ventilator as they were closely monitoring everything and it was still likely that she may need to go back with a trackie as they call it. It's at this point I just wanted to say this is George, now she's back in control that simply won't happen. As the day progressed she just got stronger and stronger and lovely Dr Rosental came and explained to George everything that had happened and that they were delighted with her progress, her first question was can I get out of here and go home. He said that that won't happen and George will most likely now remain at Harefield until she has her transplant so they can closely monitor the effect the lodged stent is having in her heart and liver, but as she has for the moment stabilised she will be moved to a high dependency unit and out of ICU, he said that it his bought us more time to find the right lungs for George that will give her the best chance. He then said he looked forward to seeing her back on the ward post transplant!
To end a really unbelievable day while chatting with her lovely ICU nurse Polly
We discovered she's my next door neighbour - it's a small world! xxx
Such fantastic photos to see :-) Hoping now that those new lungs make an appearance very soon. Hugs for you all but especially from one Mum to another. Love Ruth (Grace's Mum) xxReplyDelete
Oh what wonderful news to read and what a glorious photo to see! Thank you! Keep on fighting, George, you show them who's in charge! I pray to be reading more good news in the coming days, in the meantime, I send my prayers for continued progress and for those lungs of yours to hold out until your new ones can be found.ReplyDelete