Rileys Voice

Riley was born on the 3/4/2013 at 37 weeks. He was very normal.

When Shannon & Matt took Riley home they noticed things were not right, he would spend all his time sleeping and never wake for feeds he would also make a terrible noise while awake and asleep.

At Riley 8 weeks check he stopped breathing and was rushed to the WCH. Within hours Riley was put on oxygen and sent off for test, after test. 3 weeks later after an MRI, Sleep Study, CT scan and scopes Riley was diagnosed with Chronic lung disease, central and obstructive apnea, and Laryngomalacia they went home with Riley on continuous oxygen.

They went home for a couple of weeks but Riley was feeding worse and he was not able to hold his head, roll and was spending most his time chocking and coughing. They got rushed back to hospital and Riley was put through more tests and he was diagnosed with Central Hypotonia, and BVCP ( bilateral vocal cord palsy.

Riley went home with thickened feeds, special bottles, teats and equipment and a nurse to help Riley start to improve. After an up and down few months lots of hospital admissions and appointments Riley came back to hospital at 5 months old to have his tonsil and adenoids removed to try and improve his airway.

After nearly 3weeks in hospital Riley went home, but his battle continued. In and out of hospital with feeding tubes put in and out of his nose, then December 11 at 9months Riley was rushed back in hospital he had more tests that showed he was aspirating on feeds( foods and fluids going into his lungs) he had a feeding tube placed for all liquids and made it home thank goodness just before Christmas.

The new year presented more challenges for Riley he had more tests, scans, hospital admissions and appointments.

Then April 2014 Riley really started to worsen he spent another 3 weeks in hospital and just before discharge was diagnosed with severe GORD.

He made it home for 4 days and on the 19th of May was rushed in by ambulance as Riley was constantly throwing up and chocking. After a week in hospital very sick Riley had such a serve episode of reflux that he stopped breathing and had a medical team to stabilise him.

He was then put on an emergency list for surgery and he had to stay in hospital till this.

On the 16th of June Riley had a feeding button placed in his tummy and a procedure called a fundoplication which meant wrapping the base of his oesophagus to the top of his tummy to protect him from throwing up.

Riley's recovery was very rough and he struggled to feed through his peg for a long time he is still in hospital and they have been told that at this stage Riley will never be able to experience foods orally as his lungs are not protected. This is devastating as Riley did eat orally occasionally and now he can't.

Riley's BVCP is rare and most babies like him have tracheostomy placed very early but Riley has managed to astound his team by just getting by. He also is supposed to not be able to talk, make sound or cry but he can make sound, cry and say daddy. He does get out of breath making sound and trying to babble so dies t do it all the time. They have explained that Riley somehow is using his false vocal cords,but this may fade and he may become silent.

Shannon & Matt are looking to find out more information for Riley and have the ability to give him speech therapy and possible aids to help him in the future.

They are tying to see a professor at the childrens hospital in Melbourne to get some help and further information for Riley we may need to spend a few weeks as they may need to test and investigate Riley further. They have to drive as Riley is on oxygen still and it's hard to take all his equipment. But they have the costs of travel, accommodation and the specialist over there head.

Matt will also need to take time off work to help look after the couples eldest son Lochie who is 3yrs.

Though all of this, Matt & Shannon have remained strong in having to live nearly separate lives. Shannon is at hopsital most of the time with Riley, and Matt is trying to get in as much work as he can to support the family whilst looking after Lochie.