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Isla 2.0

1 in 10. That’s the survival rate for an out of hospital cardiac arrest. Well figures place it around 8% to be exact. Given the odds Isla’s overcome so far in her little life that doesn’t actually sound too bad. Although we had the defibrillator we weren’t quick enough with it - you can’t shock … Continue reading Isla 2.0 →

thelongcutie Uncategorized Leave a comment Mar 23, 2019Mar 24, 2019 4 Minutes

I gotta to have faith, faith, faith

It’s a turbulent, stressful time living in a hospital. It’s even worse when that hospital is on the other side of the country and everyone talks funny (yes you Southern folk - you sound funny, even compared to Scousers!) It’s hard to be completely comfortable when everyone sounds like Danny Dyer. As humans we are … Continue reading I gotta to have faith, faith, faith →

thelongcutie Uncategorized Leave a comment Feb 21, 2019 7 Minutes

February: Heart Month?

If you by some chance haven’t seen, February is heart month. I don’t know if it’s because it has Valentine’s Day in it, (less said about that Hallmark extortionate day the better) but it is. Everything can have at least a day now. Did you all celebrate ‘National Measure Your Feet Day’ on January 23rd? … Continue reading February: Heart Month? →

thelongcutie Uncategorized 1 Comment Feb 5, 2019 5 Minutes

What lies beneath…

I’ve been a bit rubbish at posting recently so this is just a short one. I have about 3 partially written blogs to get on with but I’m very aware that all my recent posts have been a bit depressing so it's taking time to get the balance right. Kind of like... The ecg from … Continue reading What lies beneath… →

thelongcutie Uncategorized Leave a comment Jan 20, 2019 1 Minute

Little Star

These last few weeks have been a very stark reminder (as if I needed one) about how fragile Isla’s life actually is. I think we’d entered a false sense of security because she’d been doing well for so long. The fact she can run around and laugh while inside her heart is doing all kinds … Continue reading Little Star →

thelongcutie Uncategorized Leave a comment Dec 14, 2018Dec 14, 2018 5 Minutes

My Shame

Disclaimer: Isla is fine!!! This is a flashback! So this isn’t exactly what I’d planned to write about or been working on. I was going through my notes on my phone and stumbled upon a poem I wrote exactly 3 years ago today... so I thought I’d share it. Writing it at the time made … Continue reading My Shame →

thelongcutie Uncategorized Leave a comment Nov 12, 2018Nov 12, 2018 2 Minutes

A good dad or a good doctor?

I have recent been chatting with one of our ICU neighbours from Alder Hey who are happily (and nervously) expecting a baby in 2019. Huge congratulations and happy days! Like us they didn’t have the ‘normal’ journey into parenthood. When talking about it, we came across some common feelings... it would be like being a … Continue reading A good dad or a good doctor? →

thelongcutie Uncategorized Leave a comment Oct 25, 2018Oct 25, 2018 6 Minutes

Why Healing Little Hearts?

Many of you will have seen me sharing pictures and stories of some of our Alder Hey stars leading up to the Stars and Stripes Ball to raise money for Healing Little Hearts. We support Healing Little Hearts in recognition of how lucky we are to have the NHS, free healthcare and the expertise of … Continue reading Why Healing Little Hearts? →

thelongcutie Uncategorized Leave a comment Oct 14, 2018Oct 15, 2018 3 Minutes

Dutch citizenship – Brexit pending

If you read my first post about Italy you’ll know what I’m talking about here. This whole journey of being a parent; you think you’re on your way to Italy. You’re all prepared for it: * learned the language - vafanapoli * got the t-shirt * bought a flat above a pizzeria and got your … Continue reading Dutch citizenship – Brexit pending →

thelongcutie Uncategorized Leave a comment Sep 27, 2018 5 Minutes

Blue Badged Girl ♿️

What does it mean to be disabled? To not be-able? Able to what? It’s such a broad and ugly term. I’d guarantee that any of the disabled tennis players at this summer’s Wimbledon are able to beat me at tennis. And I’d guarantee that every athlete at the Paralympic Games is able to beat me … Continue reading Blue Badged Girl ♿️ →

thelongcutie Uncategorized Leave a comment Sep 18, 2018Sep 27, 2018 4 Minutes

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Walk The Big One complete! Brilliant experience! Honestly the scariest thing was focusing on not dropping my phone… it was a little windy at the top but the views of Blackpool were incredible! Could see right across to Southport all the way up to the Lake District. Proud of our @we_are_team1c crew ☺️ This is the ecg of 2 year old with #longqt type 1 being treated with salbutamol due to bronchiolitis (top is before, bottom is during the nebuliser). Doctors were unconcerned about prolonging his QT interval as they had done it once and nothing bad happened so they wanted to remove cardiac monitoring - this is not ok! When it is risk vs benefit and giving #qtprolongingdrugs you have to have a risk strategy and minimise that risk. As you can see it is a quicker heart rate (due to the distress of the nebuliser) but the QT is dangerously long. One worrying thing with this case is there was no plan other than the crash cart if he went into cardiac arrest and no one was in fact monitoring the ecg. There were no 12 leads done or printed at any stage. A student asked a nurse what #longqtsyndrome is and the answer was ‘a fast heart rate’. When doctor was questioned about the plan they claimed cardiology told them salbutamol was fine to give and there was no point a nurse monitoring the ecg because they can’t read them. A qualified nurse can read sinus rhythm and spot an ectopic beat or VT. When it comes to arrhythmias, local hospitals must do better! Communication from heart centres needs to improve. The Long Cutie presents… Finlay! Finlay has Long QT Type 3 like Isla and as Isla always did, he smiles even on the toughest of days. I hate that I can only use the same pictures each reel. I have 10s of 1000s of Isla but I wish there were more. Please take pictures of your loved ones and make memories, you never know when you’ll need them. Today was a @we_are_team1c proud day ❤️ We presented a cheque to @wshospscharity for their playground appeal. For children like Isla, who had regular stays in our local hospital due to common illnesses causing cardiac complications, having access to somewhere safe and sheltered to play as an inpatient would have been a dream. The play area they have designed at Whiston looks amazing and I can’t wait to see it completed. Such an honour to visit today and to be able to support such an important, yet often overlooked, part of hospital life for children. Wonky Walk 2023 #forisla It’s been an emotional day but we have smashed the target and another part of Isla’s legacy is funded. I’m so proud that Isla’s name will be spoken about by children across the world and she will help so many families because of @we_are_team1c and all your support. Really humbled. Tomorrow (Sunday 7th May) I am running a 10k for Isla followed by the 1k walk which this year is in Isla’s memory. I fully intended on training properly for this as its 10k but I have hardly done anything. Two Superheroes, two quotes. The second one especially sums up what I’m doing and what I hope to achieve. Sometimes hope is hard to see and sometimes you just need to change your perspective a little. No matter what, there’s always hope.

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Walk The Big One complete! Brilliant experience! Honestly the scariest thing was focusing on not dropping my phone… it was a little windy at the top but the views of Blackpool were incredible! Could see right across to Southport all the way up to the Lake District. Proud of our @we_are_team1c crew ☺️
This is the ecg of 2 year old with #longqt type 1 being treated with salbutamol due to bronchiolitis (top is before, bottom is during the nebuliser). Doctors were unconcerned about prolonging his QT interval as they had done it once and nothing bad happened so they wanted to remove cardiac monitoring - this is not ok! When it is risk vs benefit and giving #qtprolongingdrugs you have to have a risk strategy and minimise that risk. As you can see it is a quicker heart rate (due to the distress of the nebuliser) but the QT is dangerously long. One worrying thing with this case is there was no plan other than the crash cart if he went into cardiac arrest and no one was in fact monitoring the ecg. There were no 12 leads done or printed at any stage. A student asked a nurse what #longqtsyndrome is and the answer was ‘a fast heart rate’. When doctor was questioned about the plan they claimed cardiology told them salbutamol was fine to give and there was no point a nurse monitoring the ecg because they can’t read them. A qualified nurse can read sinus rhythm and spot an ectopic beat or VT. When it comes to arrhythmias, local hospitals must do better! Communication from heart centres needs to improve.
The Long Cutie presents… Finlay!
Finlay has Long QT Type 3 like Isla and as Isla always did, he smiles even on the toughest of days.
I hate that I can only use the same pictures each reel. I have 10s of 1000s of Isla but I wish there were more. Please take pictures of your loved ones and make memories, you never know when you’ll need them.
Today was a @we_are_team1c proud day ❤️ We presented a cheque to @wshospscharity for their playground appeal. For children like Isla, who had regular stays in our local hospital due to common illnesses causing cardiac complications, having access to somewhere safe and sheltered to play as an inpatient would have been a dream. The play area they have designed at Whiston looks amazing and I can’t wait to see it completed. Such an honour to visit today and to be able to support such an important, yet often overlooked, part of hospital life for children.
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