My name is Tina. I am very proud to be a community children’s nurse working as part of the dedicated nursing team for Jessie May Hospice @ Home Service (Bristol/North Somerset/South Gloucester/BANES/Swindon/Wiltshire). I am passionate about emotional and practical support to enable families to remain together with their cherished children at home.
During this Covid-19 pandemic with strict lockdown and shielding of vulnerable children such as those on Jessie May’s caseload we have had to greatly reduce the regular respite visits we would normally do at homes to protect them from the virus. So the majority of the 180 plus families we support we have continued to support them by telephone/video calls/outside doorstep visits as we acknowledge this is a very scary, isolating and lonely time for many of our families.
We have continued to do regular respite to those on a priority list and for these we wear full PPE including FFP3 masks/goggles/visors/plastic gowns/gloves to protect the children we visit. On a personal note as a mature nurse of a certain age this has been a challenge as it has been very hot and claustrophobic in this gear during an unexpected heatwave, but at the same time very rewarding being able to continue doing some respite care in the home.
Jessie May have also teamed up with other hospices and healthcare providers in the area to form one whole community team to work together to provide nursing care in the home for the most medically vulnerable with health packages in place, ensuring these children remain at home and out of hospital.
Caring for Finley
I have been so lucky to be part of Finley’s life and journey so far. Gorgeous Finley was born at just 2.5Kg with an extremely rare genetic condition, unable to move at all due to severe muscle weakness with a very poor prognosis. To give him the best chance of survival he had a tracheostomy and was ventilated from birth. He was born into a large, loving extended family and was very much wanted & cherished by all. My colleagues and I visited Finley on NICU weekly to get to know him, stimulate him with sensory toys and experiences and to give Mum, Annaliese emotional and practical support & to assist with preparing Finley who was likely to have a very short life to come home.
At just 5 months old still only 3.9Kg and on a ventilator to assist his breathing, little Finley came home. Finley looked so tiny amongst all the huge medical equipment surrounding him which took up most of the downstairs space, but his gorgeous smile and big blue eyes filled up the room and he became centre of attention in a busy household.
As Jessie May nurses we continued to support the family with weekly respite visits in the home providing nursing care (tracheostomy and ventilator care, regular suctioning, nasogastric feeding, careful positioning etc); also gentle exercises to his legs/feet/arms/hands to encourage gradual small movements and to stimulate Finley with sensory toys and experiences, singing, talking and story telling. Of course plenty of cuddles also.
During these visits Mum has been able to either catch up on much needed sleep or spend time with her daughters. Finley has proved to be a little fighter, survived many setbacks health-wise but has certainly exceeded all expectations and surprised both family, friends & health-carers alike. He is know 14 months old and 5Kg, celebrating his first Birthday in March at start of the Covid-19 pandemic lockdown.
He continues to be ventilated but when well spends a lot of his waking hours off of the ventilator. As much as the isolating lockdown has been a big drawback and challenge for everyone, it has actually been an advantage for Finley as he has not picked up so many respiratory infections which frequently set him back, he has been the most well he has ever been & is excelling in his development and well being. Finley has quickly mastered his speaking valve and it is such a joy to hear him competing with his sisters – babbling, singing, chuckling – he is certainly a great communicator.
During this lockdown period, we have continued to provide respite visits to Finley so Annaliese can sleep or spend time with Finley’s sisters. Finley quickly adapted to us nursing him in full PPE gear – he initially frowned and stared at us, but very quickly recognised us as soon as we started talking to him and got excited he was going to be the centre of attention for 3 hours. We have often been assisted by Finley’s little sister Charlotte dressed up in her own facemask, gloves and visor role- playing beside us. I have been aware the long lockdown period shielding Finley has been very isolating for his family with all 4 sisters (age 4-16yrs) off school, missing their friends & freedom, all ‘stuck’ at home together and Annaleise not having her close family/friends around to support her – it has certainly been a challenge and unfortunately will be continuing a while longer. I hope we have helped a little with this over the last few months and will continue to do so.
This is…how much Jessie May means to me
Annaliese says that with the Covid-19 pandemic, Jessie May’s support has meant more than ever: “They have helped to support emotionally as well as caring for Finley’s medical needs. Charlotte, my daughter, waits at the door for them to arrive. The whole family love it when they are here.”
The family have been shielding since March, which is becoming more difficult as time goes on: “It has been very isolating and very difficult. Emotionally, it has been a struggle. Especially for my older children who aren’t able to see people that we rely on regularly. They miss their friends and school and normal life.”
Overnight, the family’s support network of friends were forced to step back from the usual help they provide to the family: “I miss the cups of tea and chat with friends. We are really starting to feel the impact now, we are under each other’s feet. Everybody needs their own space at times. Fortunately Jessie May make this happen, without their support we would be completely isolated.”
The impact of isolation on the family has been substantial but as Annaliese explains: “Lockdown won’t ease for us as a family for a long time. If you have a seriously ill child, it is like being in limbo. Everything is so uncertain and we need Jessie May more than ever.”
