Rhys's Journey
We are the Sullivan's; Duncan, Naomi, Imogen and Rhys. Rhys was born 5 weeks prem in April 2014. Rhys was what seemed a healthy baby although things were set to change. Two weeks after his birth I got a life threatening blood clot in my leg which made me temporarily sofa bound, although painful for me this would save Rhys's life. I spent the day snuggled up cuddling Rhys whilst my mum ran around after Immi. Duncan works long shifts overseas so was away. It was on this day that Rhys turned blue; a colour I have never seen in a person before, his body was limp and lifeless. My friend was round so shouted for my mum who got Rhys breathing again. An ambulance was called and he was taken to Hastings conquest. Rhys continued to stop breathing throughout the night and my mum was told not to leave us as it didn't look like Rhys would make it through the night. Rhys was retrieved and taken to The Evelina hospital, London. After numerous tests Rhys was diagnosed with para echovirus, he would remain sedated in order to recover. My leg was so bad that I was admitted at this time to St Thomas's for 5 days, suddenly separated from both of my children.
Rhys recovered from the para echovirus but further tests showed that he had a vascular ring, his subclavian artery was constricting his windpipe. He was operated on in June but the surgeon was unable to save the main artery in Rhys's left arm. We were hopeful that with extensive physio we could work on Rhys's left arm development but this was to become the least of our worries.
Rhys was discharged after surgery but still wasn't right. With Duncan home we both became concerned that he didn't seem like a normal baby, he slept 12 hours solid through the night was reluctant to feed and didn't respond to us.
He stopped breathing on three separate occasions and ambulanced into hospital, with tests showing nothing was wrong. On the third time I refused to take him home, Rhys stopped breathing the next day and finally I was being listened to. He was retrieved back to The Evelina hospital. Here Rhys's heart stopped twice, his lifeless body lying there with various health professionals working on him, the sound of the machine doing a rhythmic beat again I will never forget. The only solution was to intubate Rhys and keep him under sedation until it could be found out why this was happening.
11th August Rhys was fitted with a tracheostomy which was connected to a life support ventilator and our baby was awake. People look at Rhys and his machines and the fact that now he needs 24/7 care and comment 'poor you' but we are so lucky and look past this, he is alive!
Further tests reveal Rhys has tracheobronchial malacia, this is where his airways are floppy and aren't rigid enough to stay open by themselves. This has been caused by a condition known as DiGeorges (22q11.2 deletion).
Rhys got moved to The Royal Alex in Brighton in September which is where he waits until he is healthy enough and we have the right provisions in place to help with his care.
Due to rhys's condition he struggles to fight infection, he has a very small thymus if one at all so has a very poor immune system.
If we can keep Rhys well and support him through this he could be trache free within 5 years.
As a family we have been under huge pressure not just emotionally with Duncan having to continue to go over seas not knowing what he would be returning home to next but also financially travelling to London daily and now Brighton. We also have our 2 year daughter Imogen who we have been trying to keep life as normal as possible.
We are asking for people to raise funds in any way that they can to help us pay for much needed equipment that Rhys will need over the years and the short fall in the carers budget to help with rhys's 24/7 care and to ensure that both children's safety can be upheld. We have had to adaptations made to the house in order to give Rhys a downstairs bedroom and accommodate his hospital cot. Rhys needs to be watched at all times day and night and at times he will need two people to meet his medical needs. Rhys's care costs £10,000 per month and not all of this is funded by the authoritise. Rhys is booked to have an operation to have a gastrostomy so he can be fed directly into his stomach. We are hoping to raise funds as soon as possible to get Rhys home and away from the hospital bugs which could be life threatening for him.
Thank you for your support.
Love the Sullivan's xx
