Since Brett's ICU on the 15th May, he has had to endure:
Being paralysed from the neck down due to severe Guillain- Barre Syndrome
Chronic Sleep Deprivation
Chronic Oedema -Massive and dangerous fluid retention
Extremely Poorly kidneys
High Blood Pressure
Various vitamin deficiencies
His blood vessels in his legs ruptured when the Physios tried to get Brett standing when he had platelets of 3
Repeated E-coli urine infections
HHV6B which is causing the poor engraftment
Constant pain
He still has no cells and has a platelet transfusion everyday and regular blood transfusions although he is 100% donor and cancer free.
Its been a terribly hard time.
This blog became harder and harder to write as time passed. Every time I tried to put this nightmare into words I found I just couldn't do it and had to walk away.
Seeing the words on the screen somehow made it seem every more real.
It has been an utter hell.
We are very lucky to have Brett here but its been the hardest thing we have ever had to go through as a family and I feel really angry sometimes because for the love of God, haven't we been through enough????
Its not fair, its just not fair, why us?
Can't fate go and pick on someone else and just give us a break? - that could come across childish but I don't care.
The hospital has been good sometimes but unfortunately they have also had times when they have been very very bad.
I have made three complaints in writing and numerous verbal complaints.
I would like to say the complaints have been over small things but, alas, no. The complaints were about very big things such as:
Not telling us Brett had very poorly kidneys AFTER the nursing team had failed to give him his Kidney protection tablets, we only found out when a Kidney consultant turned up.
And a time when I was left cleaning my paralysed son on my own whilst the nurses button was not being answered.
This can happen because the nurses are busy but when I left the room to grab a towel quickly, I discovered the nurses sitting at reception having a good laugh and a chat.
I was livid and its the first time in my life that I went to walk away, stopped, turned around and told them exactly what I thought of them. I told them they were disgusting and lazy and careless and shouldn't be nurses if they didn't want to help with personal care (you'd be amazed how many don't )
There has been poor care, extremely poor doctors (who must have bought their degrees from Ebay) and poor decisions made by Brett's medical team.
The fact Brett is still here and fighting, remains a mystery to everyone really.
But he is here and the fight will continue until we can all walk off into the sunset together and get that very much needed - Happy ever after.
High Blood Pressure
Various vitamin deficiencies
His blood vessels in his legs ruptured when the Physios tried to get Brett standing when he had platelets of 3
Repeated E-coli urine infections
HHV6B which is causing the poor engraftment
Constant pain
He still has no cells and has a platelet transfusion everyday and regular blood transfusions although he is 100% donor and cancer free.
Its been a terribly hard time.
This blog became harder and harder to write as time passed. Every time I tried to put this nightmare into words I found I just couldn't do it and had to walk away.
Seeing the words on the screen somehow made it seem every more real.
It has been an utter hell.
We are very lucky to have Brett here but its been the hardest thing we have ever had to go through as a family and I feel really angry sometimes because for the love of God, haven't we been through enough????
Its not fair, its just not fair, why us?
Can't fate go and pick on someone else and just give us a break? - that could come across childish but I don't care.
The hospital has been good sometimes but unfortunately they have also had times when they have been very very bad.
I have made three complaints in writing and numerous verbal complaints.
I would like to say the complaints have been over small things but, alas, no. The complaints were about very big things such as:
Not telling us Brett had very poorly kidneys AFTER the nursing team had failed to give him his Kidney protection tablets, we only found out when a Kidney consultant turned up.
And a time when I was left cleaning my paralysed son on my own whilst the nurses button was not being answered.
This can happen because the nurses are busy but when I left the room to grab a towel quickly, I discovered the nurses sitting at reception having a good laugh and a chat.
I was livid and its the first time in my life that I went to walk away, stopped, turned around and told them exactly what I thought of them. I told them they were disgusting and lazy and careless and shouldn't be nurses if they didn't want to help with personal care (you'd be amazed how many don't )
There has been poor care, extremely poor doctors (who must have bought their degrees from Ebay) and poor decisions made by Brett's medical team.
The fact Brett is still here and fighting, remains a mystery to everyone really.
But he is here and the fight will continue until we can all walk off into the sunset together and get that very much needed - Happy ever after.
No comments:
Post a Comment