The story of Sherri
Cory’s story began on the 3rd of january 2013 at Harrogate district hospital just hours after Cory was born he was admitted to the SCBU unit due to very odd jittery episodes which the doctors wanted to monitor for 24 hours but after the first day he hadn’t got any better and was requiring a NG tube for his feeds but at that point in time they just thought the feeding needed to be built up, he also had a condition called bilateral talipes of the feet which meant his feet were turned inwards towards his legs like little golf clubs which we had found out about for his 20 week scan but that’s all we knew was wrong everything else on scans and midwife appointments were all normal.
In what seemed like 2 minutes a week had passed and cory was suffering with a lot of mouth secretions which were very overwhelming for him and started to need a lot of suctioning as he couldn’t clear them himself within that first week he’d had lots of weird and wonderful tests which all strangely came back negative which would suggest there was nothing wrong with him and left the doctors very confused.
We stayed at Harrogate for a further 3 weeks as he was still under observation mainly from a feeding point of view as every time he took a bottle he turned blue which was very concerning so in the end the doctors decided that Cory needed a gastostromy as there was something more serious going on at the back of his throat so at just a month old Cory was transferred to Leeds general infirmary to have his first peg sited and for the beginning of his treatment for his feet which involved plaster casting once a week to correct the position of his foot.
A week after his peg was fitted they discharged him home still not knowing any more about what was wrong with him but he seemed to be doing ok with his feeds so we thought all was well then 5 days later Cory suffered a collapse due to a severe chest infection and we ended up on PICU at Sheffield as Leeds had no beds we stayed there 48hours till he was stable then we were transferred back to Leeds.
On our return to Leeds we stayed there 8 weeks as he was up and down with oxygen levels due to his mouth secretions and whilst we were in further tests were carried out and still everything was coming back negative apart from they found he was having renal troubles and following a Videofluoroscopic Swallowing Study they found little man was struggling to co ordinate his muscles to swallow efficiently there fore aspirating onto his chest so at this point we ended up with lots of weird and wonderful medicines which appeared to help and he ended up having his peg changed to a gastro jej feed due to severe gastro reflux which made him a completely different baby he seems so much calmer although he’s never once cried anyway.
After 8 weeks we finally got to go home again still unaware of what his condition actually was but he was once more well enough for home and we managed to stay home 3 weeks before be admitted again with another chest infection this time managed to get away after 2 weeks as he made a swift recovery it appeared when he got un well a bit of oxygen and he was back on the way to recovery bless him.
Following that admission we managed to stay at home all summer as he was really well still needing suctioning but we had a home machine for that and a nebuliser to open his airways when having a blip.
After a lovely summer the dreaded bugs were back in September and Cory was admitted in October with a chest infection but this time he had grown Pseudomonas and was very poorly and really struggled to come off the oxygen but after a further 2 weeks we were discharged but the following day we had to go back because following a few visits he had pulled his jej tube out again and after waiting all day for it to be re inserted we got to go back home but that wasn’t the end of it the following morning Cory fell really poorly and became unconscious so we had to rush back in an ambulance and once we hit A&E Cory suffered a cardiac arrest and collapsed but thanks to the wonderful team at Leeds they managed to get his heart beating again but for a few days after it was touch and go he was back on PICU and very poorly the surgeons took him down to theatre and opened him up as there had been some questioning as to whether he may have perforated his bowl with the pulling or re inserting of the tube but all appeared normal and a week later he was back to his normal self would you believe and back home.
But then a week on he pulled his tube out again and following it being re passed this time we had to stay in over night to make sure all was well but the surgeon came and told me her concerns about how often he was pulling his tube so she booked him in 5 days later for a nissens fundoplication so he would no longer need the jej tube to his bowl and wouldn’t be able to reflux or be sick but it was a very big operation but I decided it was for the best.
Cory went in that day for his op and was in theatre for 6 hours but came round remarkable well and recovered within a week then returned home just in time for Christmas and has been the best I’ve ever seen him since.
But then just after his op cory had a neurologist appointment in which they had finally picked up on something but there findings weren’t great Cory was diagnosed with something called a mitochondrial disease which unfortunately there is no cure for at this point in time and it is still very rare a lot of children who are born with the symptoms of this disease unfortunately don’t always make it passed a year old so Cory has done remarkably well and is still thriving he had his first birthday on the 3rd of jan and thankfully got to spend it at home and has just now at 13 months got his first tooth through and is still managing to stay at home bless his little soul.
We will be raising money all this year for a charity called the Lily Foundation who help support the parents of children with this disease and help raise awareness but who are also putting funds into the research towards a much needed cure!!