Daisy's last journey
Donation protected
On 24th June 1997 our first set of twins - Daisy and Jake - were born almost 3 months premature.
Sadly Daisy suffered a massive brain haemorrhage aged 6 days old and was not expected to survive the night, she was on a ventilator and consultants advised us to withdraw life support due to how bad the bleed was.
With heavy hearts we agreed ...... only Daisy was much stronger than we all ever imagined and after a few minutes she took a breath... and another, she was going nowhere in her eyes!
Daisy developed hydrocephalus - fluid in the brain - as a result of the bleed and had to have a decide fitted in her brain called a VP shunt to drain the fluid from her brain into her tummy as her body could not do that due to the blockage. Daisy would have this shunt for life and it literally was keeping her alive.
Daisy was diagnosed with severe cerebral palsy, epilepsy and a whole host of medical problems which meant she required adult support for all her care needs and was a full time wheelchair user.
Over the years Daisy has fought back time and time again, she even managed to survive a severe case of H1N1 swine flu back in 2009 that sadly took many children on PICU where we were.
We realised over the years that Daisy was a true fighter, a warrior, she has strengths and powers that baffled the medical profession let alone us.
Daisy was the happiest person ever, despite her severe and profound disabilities she never showed she was sad or unhappy, she was extremely sociable.... loved a bit of gossip and was amazing at keeping secrets.
Daisy was and always will be a massive part of our lives and was lived beyond belief.
In March this year Daisy became very unwell suddenly at day care and was rushed to the local hospital near to school. She was put in an induced coma on full life support in ICU.
Sadly she was misdiagnosed there and therefore did not get the urgent treatment she required.
It was only on day 3 the hospital finally listened to us and sought advice from the neurosurgeons on her shunt - which we was worried was blocked - following a CT scan it was shown she had a blocked shunt but even worse was the fluid had leaked inside and outside her skull causing catastrophic damage.
Daisy was transferred to another hospital where she finally got the emergency surgery she needed but it was too late, her brain had suffered a further injury due to the blocked shunt and also she had a massive bleed in her brain.
We were told she wouldn't make the night as her pupils were fixed and dilated .... but again our medical marvel proved even the most experienced of neurosurgeons wrong and after 24 hours her pupils started to respond slightly.
Daisy remained in an induced coma on Neuro ICU for 6 weeks and had to have a tracheostomy because she was requiring full ventilation.
After numerous operations, blood clots, infections Daisy started to wake up and respond to us ... small steps but she was doing it.
After 5 months in ICU and battle after battle it was decided that due to failing to get Daisy off the ventilator that the home ventilation team would get involved and we would start the process of sorting a care package so Daisy could come home as this was our new way of life now and Daisy deserved to be at home with her family where we wanted her.
On Thursday 17th August Daisy became unwell again... but as always we saw it as a " blip" ( we have had countless blips in the last 5 months)
Never in a million years did we think she would deteriorate as she did.
On Friday morning things were even worse and they were struggling to keep her blood pressure up.
Ten minutes after we arrived on the unit, machines started beeping and everyone rushed in and the consultant told us we were loosing her her organs had failed. Within seconds her blood pressure was non existent and her heart stopped...... our world had ended.... " she's gone" the consultant whispered.
We had been planning her homecoming, her future at home with us..... and now she was gone.
Then it hit me.... how the hell are we going to bury her... pay for it?? make her proud of us for doing all we could for her throughout her life and especially over the last 5 months?
I want to lay Daisy to rest where we can visit her, I want white horses to take her to her final destination not a black hearse, I want bright balloons and pretty daisy flowered tributes..... but all we have is the money our good friend Nikki had raised for her homecoming- which thankfully Nikki has said we can now use for the funeral.
I know we have friends out there who have asked if they can help, make a donation etc to help us give Daisy the send if she so deserves after the hell she has been through.
So I thought that this would be the best way.
We would be so grateful for any donation whatsoever, even £1 and if people can share this that would really help us so much.
We will do our best for Daisy whatever we have to work financially but if we could raise enough to cover the horses and carriage and the special extras we want that would be amazing.
Sadly Daisy suffered a massive brain haemorrhage aged 6 days old and was not expected to survive the night, she was on a ventilator and consultants advised us to withdraw life support due to how bad the bleed was.
With heavy hearts we agreed ...... only Daisy was much stronger than we all ever imagined and after a few minutes she took a breath... and another, she was going nowhere in her eyes!
Daisy developed hydrocephalus - fluid in the brain - as a result of the bleed and had to have a decide fitted in her brain called a VP shunt to drain the fluid from her brain into her tummy as her body could not do that due to the blockage. Daisy would have this shunt for life and it literally was keeping her alive.
Daisy was diagnosed with severe cerebral palsy, epilepsy and a whole host of medical problems which meant she required adult support for all her care needs and was a full time wheelchair user.
Over the years Daisy has fought back time and time again, she even managed to survive a severe case of H1N1 swine flu back in 2009 that sadly took many children on PICU where we were.
We realised over the years that Daisy was a true fighter, a warrior, she has strengths and powers that baffled the medical profession let alone us.
Daisy was the happiest person ever, despite her severe and profound disabilities she never showed she was sad or unhappy, she was extremely sociable.... loved a bit of gossip and was amazing at keeping secrets.
Daisy was and always will be a massive part of our lives and was lived beyond belief.
In March this year Daisy became very unwell suddenly at day care and was rushed to the local hospital near to school. She was put in an induced coma on full life support in ICU.
Sadly she was misdiagnosed there and therefore did not get the urgent treatment she required.
It was only on day 3 the hospital finally listened to us and sought advice from the neurosurgeons on her shunt - which we was worried was blocked - following a CT scan it was shown she had a blocked shunt but even worse was the fluid had leaked inside and outside her skull causing catastrophic damage.
Daisy was transferred to another hospital where she finally got the emergency surgery she needed but it was too late, her brain had suffered a further injury due to the blocked shunt and also she had a massive bleed in her brain.
We were told she wouldn't make the night as her pupils were fixed and dilated .... but again our medical marvel proved even the most experienced of neurosurgeons wrong and after 24 hours her pupils started to respond slightly.
Daisy remained in an induced coma on Neuro ICU for 6 weeks and had to have a tracheostomy because she was requiring full ventilation.
After numerous operations, blood clots, infections Daisy started to wake up and respond to us ... small steps but she was doing it.
After 5 months in ICU and battle after battle it was decided that due to failing to get Daisy off the ventilator that the home ventilation team would get involved and we would start the process of sorting a care package so Daisy could come home as this was our new way of life now and Daisy deserved to be at home with her family where we wanted her.
On Thursday 17th August Daisy became unwell again... but as always we saw it as a " blip" ( we have had countless blips in the last 5 months)
Never in a million years did we think she would deteriorate as she did.
On Friday morning things were even worse and they were struggling to keep her blood pressure up.
Ten minutes after we arrived on the unit, machines started beeping and everyone rushed in and the consultant told us we were loosing her her organs had failed. Within seconds her blood pressure was non existent and her heart stopped...... our world had ended.... " she's gone" the consultant whispered.
We had been planning her homecoming, her future at home with us..... and now she was gone.
Then it hit me.... how the hell are we going to bury her... pay for it?? make her proud of us for doing all we could for her throughout her life and especially over the last 5 months?
I want to lay Daisy to rest where we can visit her, I want white horses to take her to her final destination not a black hearse, I want bright balloons and pretty daisy flowered tributes..... but all we have is the money our good friend Nikki had raised for her homecoming- which thankfully Nikki has said we can now use for the funeral.
I know we have friends out there who have asked if they can help, make a donation etc to help us give Daisy the send if she so deserves after the hell she has been through.
So I thought that this would be the best way.
We would be so grateful for any donation whatsoever, even £1 and if people can share this that would really help us so much.
We will do our best for Daisy whatever we have to work financially but if we could raise enough to cover the horses and carriage and the special extras we want that would be amazing.
Organizer
Sharon Booth
Organizer
