Another year = Another challenge … or two!

The great Bristol family run with the kids & our biggest challenge yet - A 17.4 mile bike ride with the 3 kids too, we’d love for you to join us on our cycle challenge!

Most of you by now are aware of Theo's Journey & why we are so committed to raising money for The Grand Appeal. This year in particular, The immunology department who have been involved with Theo for since he was 4months old! For those who don't, please see below for the history.

An update on where we are with Theo's journey to date;

Theo has an Atrial Septal Defect (hole in the heart) which requires open heart surgery by September 2024, Global Development Delay & Sensory Processing Difficulties. Having received such fantastic support enabling us to recognise & support Theo with his sensory needs & make great achievements with his development he has since been discharged from Speech & Language & Portage Play therapy. He currently attends both a mainstream nursery (Bognor House) & a setting to support children with additional needs (Springboard Opportunity Group)

Theo has since had more immunology tests done 6 months ago to look for less serious conditions that could be causing Theo to get frequent infections! Thankfully we received these recently & all appears well meaning no more planned appointments with immunology!

Theo currently has 8 different medications he's on, he suffers with constipation so has Sodium Docusate for this & Suppositories when required, After frequent ear infections which caused a ambulance trip a couple of times due to making him so unwell, he has Trimethoprim daily while waiting for surgery for grommets at some point soon.

After a year of what was believed to be reoccurring conjunctivitis, we've since found that as a result of the damage the chickenpox has caused to Theo's eyelids, he's been suffering with infected ulcers regularly. He now requires eyedrops 4 times a day as well as eye gel at night time.

Theo has recently been put on to 2 new medications called diuretics due to fluid on his lungs likely due to his heart condition. He is also taking an inhaler twice a day too.

Theo currently is still under 7 different specialists; Cardiologist, General Paediatrician, Immunologist, Audiologist, Ophthalmologist, Burns & Scars team, & Health visitor.

Theo's time in the children's hospital was the most terrifying, worrying & stressful time for us as a family. With a long journey ahead & more scary times to come, we couldn't of got through it without the support of the fantastic staff & we know we will all be looked after along the way. They looked after all of us as a family not just Theo & they continue to support us regularly as we continue with Theo's journey & many appointments.

We appreciate you've all supported us to raise so much money already the last couple of years but once again we are taking on 2 new challenges & ask for any donations possible & help to spread the word of our story. It would be amazing to help other families feel as supported & comforted as we did & for the fantastic level of care to continue for all other children who need it!

History of Theo's Journey;

On the 14th February 2020, Theo developed chickenpox. A common childhood illness right? Sadly for Theo it became life threatening! Theo’s chickenpox became infected, 2 trips to the GP & Antibiotics, Theo was no better. Saturday 22nd February, Theo was refusing fluid, very lifeless & rushed to Bristol children’s hospital. Once in recess a team of specialists worked to stabilise Theo by inserting drips to rehydrate, setting up machines an regular morphine to make him comfortable. After about 11 hours of continuous treatment, an ECG & a echocardiogram was done. At midnight I was given the shocking news that Theo has congenital heart condition - Atrial Septal Defect. A large one at that, which will need open heart surgery.

Theo was admitted to Daisy ward & treated as a burns patient, receiving 1:1 high dependancy care. He required regular morphine for the pain, tube fed, regular antibiotics & a 2 hourly skin care routine of creams & dressings. Sadly the infection markers weren’t improving & he’d developed 2 skin infections & possible meningitis. Words that no parents want to hear. Unable to do a lumbar puncture due to the extent of chickenpox, precautionary treatment for meningitis was given. The news we’d been waiting for...Infection markers were very slowly improving & he was responding to the treatment! Although very unwell, high dependancy care was no longer needed & we were moved to caterpillar ward. Very excited, but also a sadness to be leaving a fantastic team that helped reach, encourage an support us in many ways.

Once on caterpillar ward, skin care continued, however there were less blood tests, less specialist visits & more smiles watching Theo improve daily. 4 long weeks later we were given the news we’d longed for... HOME TIME! Not only did the staff on caterpillar ward reassure, encourage & support us as parents, they always included Millie & Harry. They would teach them how to comfortably hold Theo for a cuddle without getting tangled in wires, keep them in good supply of toys, ice cream & generally ask how their day was. 

Since being home Theo developed hypertrophic scarring all over his body. Lazer surgery & steroid injections were required, the difference to Theo’s skin now is remarkable! There are no words that can ever express how grateful & lucky we are to have such a fantastic team at Bristol children’s hospital! We are hoping you will help us show our appreciation by sponsoring us as a family! X