Florence and the Heart Machine

Florence and the Heart Machine This page is following the journey of Florence who has Hypoplastic Left Heart Syndrome. Ran by Mum

No matter what life throws at her, this girl is so strong. Got a cheeky smile from her today 😍
14/06/2026

No matter what life throws at her, this girl is so strong. Got a cheeky smile from her today 😍

Flo update:Unfortunately Flo has been readmitted to PICU as she requires more breathing support and 1:1 care. The docto...
10/06/2026

Flo update:

Unfortunately Flo has been readmitted to PICU as she requires more breathing support and 1:1 care.

The doctors are currently trying to understand what’s happening but are a little stumped, other than it being heart related.

We’re into week 8 now and this is our 3rd re-admission to PICU - we’re all beyond tired, stressed and emotional.

Thank you to those who continue to send well wishes and gifts for Flo.

Flo update:We were making really good progress earlier this week, we managed to get off vapourtherm and wean down the ox...
07/06/2026

Flo update:

We were making really good progress earlier this week, we managed to get off vapourtherm and wean down the oxygen to almost nothing. We even managed a sanctioned visit to the coffee shop with Flo…

… however Friday her oxygen Sats plummeted again and they’ve found more fluid around her heart. This means she’s back on vapourtherm and it feels like a real step backwards.

We’re now back to trying to remove the fluid slowly again.

Little Flo update. Week 5 in hospital and I think we’re starting to struggle with being in the hospital. Flo is bored an...
29/05/2026

Little Flo update.

Week 5 in hospital and I think we’re starting to struggle with being in the hospital. Flo is bored and not eating properly, Claire is tired and emotional and Tom has been signed off work with stress.

We have had initial feedback from her tests and Leicester do not feel Flo’s currently a candidate for her next surgery. She will now be reviewed by Newcastle in the coming weeks to understand their opinion on next potential steps.

We always knew putting Flo through the tests might rule more out than in, sadly.

She has done really well weaning her high flow oxygen down and fingers crossed that continues to go well over the next few days.

We’ll update again once we know more.

We would like to say a huge thank you to anyone and everyone that has supported us on our hospital journey. From bringin...
29/05/2026

We would like to say a huge thank you to anyone and everyone that has supported us on our hospital journey. From bringing us care packages, food, buying things off the wish to helping us on the Go fund me page. It has made such a difference for Flo to have things to play with and do whilst in hospital and tethered to her bed.

Thank you from the bottom of our hearts ❤️

Flo update:We’re locked in a 1 step forward 1 step back phase at present. We had managed to get off vapourtherm and star...
21/05/2026

Flo update:

We’re locked in a 1 step forward 1 step back phase at present. We had managed to get off vapourtherm and starting to wean her oxygen support - which is great as she is able to go into the tv room at the hospital on her little canister.

However, yesterday her oxygen saturations started to suffer again so we’re back on the vapourtherm and tied to the bed again.

It’s more evidence (as if we need it) that Florence’s system is incredibly weak and delicate and this has been a big knock to it.

FLO UPDATE Flo made it through the tests. It ended up taking Thursday and Friday due to various reasons. She’s now recov...
16/05/2026

FLO UPDATE

Flo made it through the tests. It ended up taking Thursday and Friday due to various reasons.

She’s now recovering in PICU again. We had a rocky last night as her body is so fragile, it reacts badly to coming off the sedation / drugs they use which then badly affects her heart and oxygen saturation.

We’re hoping she now rests.

Thanks for the messages of support we really appreciate them.

Picture of Flo from before the tests

Flo update: Thursday is a big day for Flo. We always needed to have some invasive tests done to understand what heart op...
11/05/2026

Flo update:

Thursday is a big day for Flo.

We always needed to have some invasive tests done to understand what heart options are in her future or not (fontan operation / transplant), but her recent cardiac arrest has now made the general anaesthetic and the tests themselves very high risk.

We did have the option not to do the tests, but we don’t think that’s in Flo’s best interests and we owe it to her to keep proving she can do miraculous things.

We will be quiet until after Thursday when we will update again.

Quick Florence update. Lots of people getting worried, apologies, just had a few busy days. Florence has stepped down fr...
08/05/2026

Quick Florence update.

Lots of people getting worried, apologies, just had a few busy days.
Florence has stepped down from CPICU to the ward which is great news. The fluid on her lungs is reducing steadily now.

The blood clots have dissolved and she no longer needs to have anticoagulant injections.
Her poor legs are black and blue.

We are now talking about next steps with the cardiologists but none of our choices are simple and carry a lot of risk.

Our little lady is trying so hard, but she is still very ill.

Something that goes against every bone in our body…Lots of people have asked us to do a wish list which we shared via ou...
05/05/2026

Something that goes against every bone in our body…

Lots of people have asked us to do a wish list which we shared via our stories for Florence. We have now started putting some practical things for us as well whilst we navigate living in hospital for an undetermined amount of time. I will share the link in our bio too.

https://www.amazon.co.uk/hz/wishlist/ls/O3NKY5ED6BQG?ref_=wl_share

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Burton Rd
Atherstone
CV9 3PX

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