Riley's story...

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

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 we went home with Riley on continuous oxygen. 

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. We 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 do all three although he does get out of breath alot. 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. 

After seeing a professor here in melbourne we made the move to get the best medical help. 

We moved to Melbourne on the 10th October and Riley was getting really sick and dropping weight. By the 26th October Riley was rushed to the royal children's hospital and remained there for a long time.
Riley got so so sick and his body was filling with gas and air so much so it rendered him completely unable to be feed. So a central line was placed and Riley became fully dependant on TPN which is basically feeds food through the veins.
Riley had so many tests, scans and surgeries he went under anaesthetic 12 times and had some major procedures all to try and figure out what was wrong. But nothing. All it showed was Riley's body was sick but we didnt know why.
So we spent Christmas, New Years Easter and Rileys 2nd birthday still in hospital. Just after Riley's second birthday a surgeon wanted to insert a tube in his lower bowel so we could feed him and drain air and gas through another tube in his stomach. So the surgery was done on the 6th of April and Riley started to be able to be feed and the TPN was slowly turned off.
By the 1 May Months in hospital Riley was allowed home we were so excited. It was going to be hard as he need to be feed 22 hours and was hooked up to machines constantly but we were home.
But things started to go pear shaped again and by the 9th May Riley was rushed into resus in ed. His heart and his body had shut down Riley was so so sick.
He was rushed to theatre to try and get a line in so we could run fluids but all his veins had collapsed.
After hours in recovery and icu having to monitor Riley we got back to the ward.
Riley's heart and body struggled for 2 weeks with discussions him being put in an induced coma to rest his body.
The TPN was started again and tests were started all over again.
We had now been in RCH for 6 weeks and home is not insight. Riley is still on TPN and partial feeds.
His specialist team are at a loss as to what he has. It's believed to be an extremely rare metabolic disorder but we don't know what as there is no one like him in Australia.
Riley's airways and lungs still pose problems specially in winter he does however have an amazing little voice.
Riley's battle is by far no where near over and we don't no from one minute to the next what his body will do all we can do us manage him.

Riley's battle to date has become even harder. In December 2015 Riley was diagnosed with ketotic hypoglycaemia which means his blood sugars become dangerously low and he has been rushed by ambulance to hospital in serious condition more times than we would like to count.
Riley has both a gastrostomy and judjenostomy as well as a special lung drainage box attached to him to drain his tummy of extreme air caused by aerophagia.
Riley now feeds with special formula 22/24 hrs a day and soon will be having major surgery to help so hopefully we can make his life a little easier. 

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 their eldest son who is now in his first year of primary school.

Help spread the word!

Riley is an absolute superhero who endures constant medical procedures in order to keep him well. Hes the bravest little 3 year old i know, not too mention his amazing mum, dad and big brother who go through so much and still have smiles on their faces everyday.