TeamEvie

19th January 2019

Showcase Saturdays

Greg Johnston

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Showcase Saturday – Episode #12

Welcome to the latest episode of our Showcase Saturday feature! This time we have the story of Rogan Doyle, kindly written by his mam Becca…over to you Becca!

Rogan is the most amazing little boy. He lights up any room with his smile. He has something called VACTERL, an association made up of lots of different things which stands for; vertebral defects, anal atresia, cardiac defects, tracheoesophageal fistula, renal anomalies, and limb abnormalities.

In 2 years he has fought so much, more than anyone should have to fight in their life. At 2 weeks old he had an 11hour open heart surgery leaving his chest open for 3 days as it was so swollen and then battled a chylothorax. He had drains placed through his ribs for a week and was put on a special diet but this didn’t help and he needed surgery for a ligation of the thoracic duct. At 9 weeks old he went into respiratory arrest on ward 23 Freeman and was intubated (put on a ventilator) and taken back up to PICU. They attempted a further 3 times to take out his breathing tube but Rogan arrested every time, it was then they made the decision to give him an artificial airway – a tracheostomy and to go on permanent ventilation.

He had the surgery the next day and 2 days later (after over 2 months at The Freeman) we were moved from the Freeman to the Great North Children’s Hospital PICU ward 12 – this is where we stayed for the next 6 months.

Thinking now he had the tracheostomy it was all going to go smoothly we were sadly mistaken…

When we got there he had a full skeletal survey where they found his bum hadn’t formed and was just a pinhole so he was taken for surgery on that. Once off sedation it was clear Rogan was still struggling, he was having “blue episodes” every day where they were having to give him rescue breaths and sedate him. Sometimes they struggled so much to get him back they told us to prepare for the worst. They found his airways were so severely narrowed and under formed he was going to need more support. 

After a particularly bad night Rogan went into arrest and was placed in a coma and paralysed. He underwent a procedure to place a metal stent into his trachea the next day and within a few days the difference was amazing he smiled at us and we knew we had done the right and we started training to take him home.

Rogan’s full diagnoses were made:

💚scoliosis

💚fused, misshapen and missing vertebrae,

💚 short neck

💚weak left side of face

💚ptosis of left eye

💚 under developed ear

💚fused ribs

💚dextrocardia

💚coarctation of aorta

💚tachycardia

💚missing left arm

💚anal stenosis

💚hypoplastic thumb

💚 short radius bone

💚 severe tracheomalacia

💚 severe bronchomalacia

💚 collapsed upper airway- he can no longer be intubated if ever needed to be.

💚 tiny kidneys

💚 small left lung

With all of these things Rogan continues to defeat the odds with a smile on his face. When we did manage to get him home, we were back in PICU within a week with him fighting for his life – just from a common cold (with his immune system being so weak). We’ve been in and out of hospital constantly since, he’s had 23 procedures done and he was only 2 on December 22nd 2018.

We are currently in the Great North Children’s Hospital, they removed his metal stent a week ago due to it being dislodged and blocking both lungs causing me and Damian to resuscitate him,  since removing it they have found his airway is as narrow as it used to be and he has begun to struggle again and needing 24hours a day ventilation. Being upset doesn’t cut it, but I know my boy will carry on as strong as he’s always been.

 TeamEvie have helped us massively with TVs, fibre optic lights, cot mobiles and toys for Rogan keeping him entertained for such long periods in hospital made things a lot easier for him. Toiletries and a bag of stuff for us when we were transferred by complete surprise [Nectar Parent Bag]. the mugs to have a hot drink while sat in PICU are perfect. The little things do really matter. It would have been much longer days without the support of  TeamEvie who were there whenever we needed something x

Thank you so much to Becca for sharing her families story. We are so glad that we are able to make a difference to such a brave, incredible family!

If you would like to help us to continue helping families like the Rogan’s, you can by donating here. Or if you have been helped by  TeamEvie and would like to share your story in a Showcase Saturday please get in touch.