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An update from Alfie - August 2020

Lockdown has been a strange mix of emotions for us. It was a bad situation at the start with all the worry of keeping Alfie safe but ended up with some good coming out of it. 

When it began I was terrified that if Alfie caught coronavirus he might not get the care he needed. Hospital beds were in short supply and I could not help thinking that if there was one bed and two children needed it, the child with the bigger chance of survival would be chosen. And that wouldn’t be Alfie. 

Even Julia’s House coming in, with all the careful precautions the nurses would take, seemed too big a risk.

Because we were in total isolation, no hospital appointments, no visitors, no going out, Alfie wasn’t exposed to usual bugs and illnesses that can make him really poorly. 

The result was that Alfie’s heart function massively improved, doubled from 20 to 40 per cent. This was expected to take years but happened in just six months, such wonderful, amazing news.

It was a bit of a shock actually, but a lovely shock. The consultant told us Alfie was stable and no longer in the most vulnerable group for shielding. We would still have to be careful, but no longer living on a cliff edge.

 

It meant I could have Alfie’s nurses back to help us which was fantastic! They have played with him and taken him to the park for some lovely long walks in the fresh air to give me some space and time.

I spent most of these care sessions deep cleaning the house – even cleaning out the fridge! Not very exciting but it actually a massive help, to be able to really focus on a task.

When you have a really poorly child your attention is almost constantly on them. You can’t take your eyes off, even for a moment. Every few seconds you are stopping and looking over to make sure they are OK – things can change so quickly.

With Julia’s House supporting us again everything has felt a lot more relaxed – for all of us. Alfie’s sister Tia has had a tough few months and has struggled the most with all this. It is lonely for a young teen to be in strict isolation, away from her friends

When lockdown started to ease it was hard for her to understand why she still had to stay away from everyone. It just didn’t seem fair that she should miss out because of Alfie.

She is really looking forward to going back to school – and I am too! Trying to home school Tia while looking after a seriously ill little boy 24/7 was impossible. I just could not concentrate.

Having Julia’s House back in our lives has been a welcome distraction for everyone. I am so grateful for the help but have felt so mean too – it must be horrible for the nurses to have to work with all the PPE on.

I was worried that it might upset Alfie seeing them in their masks and protective clothing because it would feel like a hospital environment for him but actually Alfie has been really chilled and laid-back about it all – he is just so pleased to see them. 

It has been good for him because being stuck with me all the time was making him very clingy. He needs the distraction of new faces and trips out.

Things certainly have changed - including Alfie.  He went into lockdown as a baby and came out as a toddler. He’s grown into a proper little boy now!

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When you have a really poorly child your attention is almost constantly on them. You can’t take your eyes off, even for a moment. Every few seconds you are stopping and looking over to make sure they are OK – things can change so quickly.

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