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An update from Noah - August 2020

Julia’s House is a massive piece of a jigsaw that was missing from our lives for years. I cannot put into words what it means to us to have that support now.

Noah has been socially disconnected being away from the Julia’s House hospice and school because that is where his friendships are. Those two elements are his life and mean everything to him.

Having care at home every week during lockdown has helped him through that – and been amazing for us. The Julia’s House nurses are so respectful of our home and express their gratitude for being able to spend some time with our son. There is such warmth in everything they do.

It has been tough for us over the past few months. Since lockdown Noah has been rushed to hospital several times – once with an air ambulance doctor who travelled with him to keep him safe. We had to prepare for the real possibility he might die. At one point he suffered 18 hours of seizures and doctors were talking about putting him into an induced coma. 

We had a tough meeting with all the medical professionals involved in Noah’s care. We talked about an end of life care plan, which was vey distressing for us. Having Nail and Harriet, Noah’s Julia’s House nurses there to support us helped make all those difficult discussions that tiny bit easier.

 

There is a bumpy ride ahead but just knowing they are around and that they understand what we are facing is such a comfort. 

When Noah’s seizures were bad he just wasn’t eating, getting weaker and weaker. We were told he needed an operation to fit a peg, a button into his stomach so that he could be tube fed. It was the only way we would be able to get enough nutrition and fluids into him to help him stay strong.

I felt very emotional about the thought of another operation. Every time he goes through those doors into theatre we have to say our goodbyes, give him one last kiss. 

We were so upset and anxious about it, but Noah’s nurses talked us through the whole procedure really calmly, explaining how it would work and the benefits for Noah and were just so kind. 

They took all the fear and stress away. It is this side of the service that people do not see. It is so much more than just caring for sick children. The Julia’s House team are a joy to have around and a total Godsend.

The nurses and carers totally ‘get’ us as a whole family, know what is right for us and can read our mood. They work within our normal and our normal can be a horrible place and worrying at times but they listen, they understand and they pre-empt our needs. 

They have a sense of humour too which is important when you are facing such a grim reality. We don’t want people around us who will bring the mood down. Julia’s house nurses can turn the day around and leave us all feeling so much better able to cope.

After the operation Noah wasn’t well enough to play but Laura and Harriet would sit by his bed and talk to him and read him stories. Although their faces are covered by masks and they wear all the protective clothing, he recognises their voices.

The Julia’s House nurses are Noah’s safe people. He knows why they are here and what they are going to do. Even in full PPE he is comforted just having them around.

Some days they would be here for a four-hour care session in sweltering heat in all that protective clothing, and plastic masks and I could not even offer them a drink. I am just full of admiration for how the whole Julia’s House team has carried on supporting families in such difficult circumstances.

While Noah is having his care I have spent a little time in the garden or gone out with my husband, Chris. Four hours does not seem like a lot but we look forward to those breaks so much.

Because we’ve been able to continue with our Julia’s House visits isolating has not affected us as dramatically as other people. We have been in lockdown for 11 years, caring for a really ill child so this is normal for us. 

Our life has always been about the wellbeing of our family and the simple things, not the artificial. None of that superficial stuff matters when you constantly face life or death situations.

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Since lockdown Noah has been rushed to hospital several times – once with an air ambulance doctor who travelled with him to keep him safe. We had to prepare for the real possibility he might die.

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