Because of you and your amazing fundraising, CHSF are able to fund INR home testing kits for our heart warriors.
These kits reduce stress and allow a patient to test their blood levels themselves at home without missing school for hospital appointments.
Rebecca tells us all about her daughter Bella’s journey with congenital heart disease so far and the difference your donations have made to their family…
Isabella is six in December. She has Hypoplastic Right Heart syndrome which means she has no right ventricle. She has spent many nights in hospitals due to heart procedures. From open heart surgeries to cardiac catheter procedures and MRI scans.
All the heart surgeries Bella has had are life prolonging surgeries. Before she was born we were made aware that she would need three stages of heart surgery. But the first two stages she needed repeating.
She has just had her final stage in July this year and the difference in her is amazing. I never realised just how much she had deteriorated before this surgery until she recovered from the Fontan and she could run up a flight of stairs and it hardly take her breath. Before the surgery I would have to carry her up the stairs.
Bella has had many blood tests and each one has been traumatic for her. The older she is the harder blood tests are. The last few blood tests were horrendous and emotionally draining for both her and me.
Bella in hospital, December 2014
Bella after her most recent surgery, July 2020
Bella with her new INR kit, funded #BecauseofYou
The bloods needed the day before her last surgery were awful. Phlebotomy waited 20 minutes for her to calm down but she didn’t so they said they couldn’t do them right away. We then had to go back onto the ward for another go before going to theatre.
The first few weeks with Bella’s new INR machine were a little challenging, but me being able to do it for her was a massive help. Bella much prefers it that I can do this with her and we do not need to go to the doctors for a blood test.
When she first started taking Warfarin her INR numbers were, and still are, a little all over the place. If she’d needed to go to hospital each time we needed to test her INR level she’d be petrified of all doctors – and they’d be her least favourite people!
That’s the last thing we want. I can’t even begin to tell you how grateful I am that Bella and I are able to do her INR test together at home. And it’s nothing to her now. It doesn’t phase her. She’s proud of herself and how brave she is.
The machine makes a noise as it turns on and I’ve sat next to Bella while she’s playing/watching telly and it’s made the noise. She’s half rolled her eyes, looked at her hands to pick the finger I’m allowed to use and pointed at me with it. She picks out a LOL or My Little Pony plaster and then scrunches up her eyes so I can be a “vampire”!
We high five when the machine takes the blood sample straight away (because in the beginning when I was learning I didn’t always get it straight away!) and try to guess the number that will come up on the screen. We make it a fun experience because she needs to do it so regularly and it will be something she’ll need to do for the rest of her life.
She loves that she has some level of control of the machine, picking the finger we can use and the plaster. It’s so much better for her than the alternative.
If we didn’t have the INR home testing kit having to go into hospital all the time would be an absolute nightmare! It would be traumatic for Bella and it’s 25 minutes from our home. Also a hospital is one of the last places we want to be at the moment with the pandemic.
The convenience of this machine for so many reasons is a godsend and we are so grateful to Children’s Heart Surgery Fund for taking away the trauma of regular blood tests for Bella.
Bella started year one in September and on her first day of school we needed to do a blood test for a telephone appointment I had in the afternoon.
The INR machine meant that we were able to do the test and she could get on with the first day being back to school after six months off – due to the pandemic and her big heart surgery!
Because of you and your donations Bella can now regularly check her blood, with her mummy at home, without the the stress of going to hospital.
By making a donation to Children’s Heart Surgery Fund, you ensure we can keep being there for children like Bella and keep supporting hearts for life. Thank you.