My Longest Hospital Stay Since I Was Born

Hi everyone,

I thought it was time I gave you all an update because I’ve been in hospital for over three weeks now and it’s been one of the toughest journeys I’ve had since I was born.

I came into hospital because I was having lots of trouble breathing. After lots of tests and checks, the doctors discovered I had pneumonia and a partially collapsed lung. Breathing became really difficult for me, so I needed help from a machine called Vapotherm to support my lungs while my body tried to recover.

For the last three weeks there have been good days, difficult days and some very worrying moments too. Sometimes my Vapotherm support was reduced because I was improving, but then I’d have a wobble and need more help again. Recovery is never a straight line. It can feel more like climbing uphill in the rain while carrying a backpack full of bricks.

But I’ve kept fighting.

And I haven’t been fighting alone.

My mummy and daddy have barely left my side the whole time. They’ve sat beside my bed through long days and even longer nights listening to monitors beep and machines hum around us. They’ve held my hand when things have been scary, celebrated every tiny improvement, and somehow kept going even when they were completely exhausted themselves.

Hospitals can feel very lonely places sometimes, especially during the night, but having them there beside me has made me feel safe.

My big sister Dollie and my brother Archie have also been amazing while I’ve been poorly. Being away from your little brother for such a long time is really hard, especially when family life suddenly becomes hospital visits, rushed routines and missed time together.

They’ve both had to share mummy and daddy with hospital corridors, doctors and machines for weeks now, and I know it hasn’t been easy for them at all. But they’ve still kept cheering me on every single day with cuddles, smiles, messages, visits and lots of love.

I’m very lucky to have them.

The good news is that I’m now finally off Vapotherm and my oxygen levels and observations are staying stable by themselves. After three long weeks, that feels like a huge step forward.

While I’ve been poorly, my dystonia has sadly become much worse, so my doctors decided it was time to review my medications. They are now slowly reducing one medicine while carefully introducing a new one that they hope will help me feel more comfortable and better manage the dystonia.

So far I’m tolerating the new medication really well, which is making everyone feel hopeful.

This has now become my longest hospital admission since I was first born and stayed in both the Oliver Fisher Special Baby Care Unit and the London Evelina Children’s Hospital. For my family, it has brought back a lot of emotions and memories from those very early days of my life.

But even during the hardest moments, we’ve kept finding little lights in the darkness.

A smile.
A cuddle.
A peaceful sleep.
A good set of observations.
A tiny bit of progress.

Sometimes the smallest victories shine the brightest.

I’m getting closer now to finally going home where I belong, back with my family, my own bed, my toys, and hopefully quieter days ahead.

Thank you to every single person who has supported me and my family during this stay. Every message, comment, prayer and kind thought has helped carry us through the difficult days more than you could ever know.

I’m still here.
Still smiling.
Still fighting 💙

Love,
Lenny