This is probably the last one from me, as hopefully Em will have access to this soon.
I had the wonderful, uncanny experience today of walking into my sister's hospital room and seeing her completely without tubes, drips, chest drains, nasal specs or trachea mask for the first time in two years. The team have been cutting down on the support for a while now, but the last thing to go today was the tracheaostomy tube, and the decision was made to take away the oxygen too. Em was completely independent, and while this is obviously a huge step and obviously causes a few jitters at first, she looked thrilled and disbelieving at the same time!
The miraculous nature of what medical advances have done for Emily has only been hitting me (perhaps I'm a little dense) over the last couple of weeks. As she pushes past the boundaries that CF had set for her before this operation, the reality of what she can really do now is only just becoming clear. I am so excited to discover what Em can achieve now she isn't breathless, tired, and confronting her own mortality. If she was positive and assertive in that situation, watch this space for a human whirlwind when she's fully functioning!
I'm so indebted to the wonderful Harefield team for everything, and so proud of Emily's physical and mental capability throughout all this. She inspires me to be a better person, and to never take my existence for granted. Being able to leap on to her hospital bed for a cuddle, with no delicacy in regard to drains, monitors or cylinders, was better than any feeling I've had in a long time. Keep promoting organ donation... it IS a miracle, and the biggest miracle of all is that it is US that creates it.
A proper update from the lady herself very soon! Thanks to everyone who supported Laughter for life, it was a huge success, and Emma and Oli are such stars for making it just what Emily pictured. Great job guys.
2 weeks ago