9 family members affected by severe brain injury got together tonight and changed how their loved ones are being treated, Together, they will ask the candidates in the forthcoming election to pledge their support. Together, they will build and use adequate neuro rehab therapy services. Together, they will take responsibility and show leadership.
On the ‘home front’, today was exhausting. We hosted a massive training session for Pádraig’s PAs, directed by NRH experts, with some input from community services and Pádraig’s GP. There is a rumour that this was the last big s.tep to get Pádraig a home care package. It was a good, yet very long day
I am utterly and completely exhausted but know that I will remember this day for a long time.
Not least, because this day, one year ago, a truly courageous doctor in Hamburg’s University Hospital, against the explicit advice of Pádraig’s neurologist and the whole rehab team, all of whom had branded us hope-against-hope parents, who wanted to convert the tracheostomy into a permanent ‘feature’, took out Pádraig’s tracheostomy and got Pádraig a bed, and us a reclining chair and a mattress on the floor for nearly two weeks.
If it had not been for us pushing and pushing, and insisting and insisting, against the neurologist’s and his team’s expert opinion, spending sleepless nights with fear leading up to this day, and more sleepless nights after this day one year ago – they had told us he might choke without the tracheostomy -, had it not been for this courageous doctor in the UKE who supported us, against the established and stated view of the ‘experts’, instead listening to us, Pádraig would now have a surgical, permanent tracheostomy.
Time to take responsibility ourselves.