In Daisy's hands

I wasn't supposed to be writing this update.  This update was supposed to be all about how it really does take a village to bring up a child like Daisy, joined up services around education, health and social care.  How I have been struggling for months trying to sort up some joined up thinking to support me to keep Daisy at home while also allowing her to access the education she needs and wants.  I wish I was writing about this, but while I have been trying to sort out some joined up thinking and encouraging teams to communicate so that we have the basics in place like hoisting and care I have also been really worried.

Over the past few months Daisy's health has really deteriorated, she has been increasingly more fatigued, asking to go to bed earlier and earlier, nothing that I could put my finger on but just not right in herself.  Nothing overly remarkable was showing in her bloods but she was clearly going downhill until I eventually took her to A&E a couple of weeks ago and she was admitted.  Anyone who knows me will know how worried I was because normally I move heaven and earth to avoid Daisy being admitted to hospital.

Daisy has subsequently been transferred up to our specialist hospital, Great Ormond Street,   Since her arrival she has deteriorated quite significantly and all her specialists have been scratching their heads to work out what is wrong as each of her systems throws up an issue.  Andy and I always chose to be very open about what was going on with Daisy and to share her story, good and bad  because we felt it was important for people to have a window into a world that they probably knew nothing about.  When Andy was ill we shared many of the details of his treatment and prognosis because we could not be open and up front about Daisy and not be the same about him.

I've always been very optimistic and upbeat about Daisy but also realistic, we know where we are ultimately going, she is machine dependent 24/7.  Tonight Daisy is really poorly, she has really gone downhill.  Her bloods are awful.  We are waiting for surgeons to review her to rule out or in an obstruction, we are waiting for the haematology team to decide if they want to do a lumbar puncture, she is being monitored by the cardiac team as her cardiomyopathy has progressed and she is needing so many fluid boluses that we have to make sure it does not impact her heart, the neurology team are monitoring her - she is in amazing hands but I am worried.

Our three older children know the score, they know this could go either way.  Antibiotics and anti-fungals are being poured into her, she is on IV pain relief, we are however totally in Daisy's hands.  She is exhausted, she wants to go home and see Pluto.

She has defied the odds so many times, I am counting on her amazing strength and resilience to get through.

I miss Andy.  I wish he was here to walk this path with me.

Please keep Daisy in your thoughts tonight.

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