6 months of complex neuro-rehabilitation and functional motor recovery after brain surgery
Ends on: 15 May 2019
dziękujemy za dobre serce i aktywny udział w zbiórce. Wasza pomoc umożliwiła spłacenie raty za zorganizowany przez nas poszpitalny pobyt w małopolskim ośrodku rehabilitacji wiosną 2018 roku. NFZ jak dotąd nie oferuje pacjentom wymagającym wspomagania oddechu żadnej formy regularnej wielospecjalistycznej poszpitalnej rehabilitacji koniecznej dla pacjenta "neurologicznego", nie pozostawiając rodzinie wyboru i skazując na komercyjne ośrodki, w których średni koszt terapii miesięcznej to około 25 tysięcy złotych...
Sam guz umieszczony niefortunnie w pobliżu pnia mózgu, jak i zabieg jego usunięcia w konsekwencji przyniosły ciężkie powikłania, w tym niewydolność oddechowo - krążeniową oraz niedowład kończyn. Zofia po wszystkich tych pełnych cierpienia doświadczeniach zachowała pogodę ducha i spokój dzielnie walcząc każdego dnia - z miłości do życia, dla wszystkich swoich bliskich i dla wszystkich, którzy w nią wierzą. Silne pragnienie życia może determinować zdumiewające wydarzenia i procesy...
Dziękujemy za całą pomoc, jaką od Was otrzymaliśmy!
Dla Buni ruszyła kolejna zbiórka na specjalistyczny turnus rehabilitacyjny: KLIK.
"I love you so much" these were Sophie's last words before the surgery - a devoted Mum, Granny, friend, an angelic nurse comforting patients. Eearly in the morning on the 6th of March 2018 the operating theatre door shut behind her. Complicated and dangerous surgery has been performed by neurosurgeons - surgical resection of cerebellar hemangioblastoma. On this day our world was torn apart. Everything has changed since and nothing else matters these days. We have been fighting this battle every day and night since, to be woken up one day to the beloved voice. We had decided to leave our jobs and University studies abroad to immerse ourselves in her care, being confident Sophie with her strong family values would have done the same without hesitation. This is why we are raising funds for the deserving cause today seeking Your kind support.
Bunia, Sunshine, Zosieńka - an affectionate polish nickname from Sophie. Her patients used to call her as affectionatelly as an Angel.Our dearest Mum and Granny, we all adore her for her positive energy and commitment to others, inspiring and supportive, always with a wonderful sunny smile despite the changing life circumstances, coupled with warmth and devotion to those in need. Sophie always reached out a hand with a selfless generosity and compassion, she always treats others with kindness and care, changing the world around Her.
Today She is vulnerable and only with a support from people with Big Hearts She will be able to recover....
Sophie was diagnosed with a femoral neck fracture in September 2017 after suffering a fall; further diagnosis - a CT brain scan and Magnetic Resonance Imaging revealed evidence of Cerebellar Haemangioblastoma - tumor located near the brain stem, surrounded by 40 mm cyst wall. The diagnosis was life changing!
"I love you so much" Sophie had replied to our "Good night" wishes giving us a warm embrace in the wintry Monday evening 6 months ago and time has stopped ticking away. We have treasured this memory in our hearts since, to light our path and still remember it, as if it was yesterday. Still waiting to hear her voice...
Immediate surgical excision of the tumor was undertaken early in the morning of 6th March 2018. The first 24 hours after surgery were stable with no side effects from the anesthesia. The very next day however, insufficient blood circulation plus respiratory problems necessitated catecholamines Norepinephrine injections to maintain cerebral artery blood perfusion. A mechanical ventilator has been utilised to assist Sophie with her breathing.After three weeks the decision has been taken by her physicians to perform a tracheotomy on the 30th of March which was Good Friday.
During the last six months Sophie has won a large number of significant battles and many struggles: blood circulation plus respiratory problems, tracheotomy and gastrotomy, a corneal abrasion of her right eye and severe inflammatory symptoms - after surgery complications, pressure injuries and bedsores, inflamed respiratory tract after numerous pneumonias contracted in a contagious hospital environment. Sophie's warrior spirit remains strong and positive. She has never given up on life!
Unfortunately, NHS did not seem to be prepared to assist patients in Sophia's condition, offering an early discharge from hospital without any support instead of a streamlined service delivered through a former after - surgery care provider: neurology unit. We have made every effort to arrange a multidisciplinary rehabilitation whether through the hospital or an external neurorehabilitation provider. Both applications have been rejected. One thing everybody has agreed on was the necessity and importance of early rehabilitation. We had no choice but to book an immediate therapy with one of a few private rehabilitation centres in Poland, where the monthly cost is around 6 thousands Euros, 25 thousands PLN.
We have organised emergency finances to be able to stay a few weeks at the complex rehabilitation centre, where we have faced remarkable stories of patients coming back from a vegetative state, from the brink. 6 months is defined as a minimum period of time to work with physiotherapists, speech/ language therapists, produce measurable effects and sustain benefits of this hard work.
Two months have passed since Zofia came back home. At the moment physical therapy is performed only twice a week resulting in improved flexibility and responsiveness, however it is not enough to make a progress. Sophie' s condition requires a comprehensive care and constant 24h monitoring. We are doing everything in our power to help Sophie to win and come back from this painful experience with the class, style and brilliant sense of humour that inspires others, as she has always done.
Every single day, wonderful things are taking place: depsite the treacheostomy tube, Zofia is attempting to speak, stand up on her own. We've learned to celebrate every moment, which shows just how much we can overcome limitations and that science sometimes has no answer for. The true possibilities of the human mind are still undiscovered, as are Bunia's!
However a Multidisciplinary Stationary Rehabilitation with a doctor's assistance in a rehabilitation centre Is crucial at this stage. We ask you: friends, relatives, compassionate supporters, Angels - please - help Sophie, Bunia, a person who never refused help to anyone...
-Zofia's daughter and granddaughter