Mason has had a fairly uneventful first few years of life if we skip past …the reflux from birth requiring ongoing medication and a gastroscopy/sigmoidoscopy by 18months, the broken leg(On a slide with a responsible adult) just before turning 2, the medically needed circumcision at 3 years old and the Tonsillectomy at 3 and a half(due to 18months of chronic recurring tonsillitis landing us in ED a few times), and finally diagnosed with Autism Spectrum Disorder (with a rather high IQ)last year…..
he was a very miserable baby from 2 days old 24/7 until diagnosed with a rare condition ‘Eosinophilic Esophagitis’(EoE), this was causing major pain and ulcering of his esophagus and we found he was allergic to most if not all foods. He then started on an elemental formula only diet(No other food or drink) at 22 months(2011). He had a Nasogastric feeding tube for 3 months last year to top up his weight. He started small food trials mid 2014 and is on a small selection of safe foods now as well as still being supplemented with the elemental formula orally each day. He has had yearly gastroscopies since 2011. He has constant joint pains that wake him at least 3 nights a week in agony. He needed his Tonsils and adenoids out this year and was diagnosed with Autism Spectrum Disorder early last year. We see specialists at least every few months.
Then in early July(2016) it all started out of no where with 2 strains of viral pneumonia, but for some reason the main/nastier virus decided to hang around in his lungs for quite some time and cause serious damage.
This in turn has left permanent damage to his lungs and has turned into a diagnosed rare and non treatable nasty lung disease.
We went from having a happy, healthy, fit and capable, outdoor loving 4 year old boy to now having a very unwell and very limited, sad and confused, frustrated and angry 5 year old boy(he turned 5 at the end of July).
We have lived in and out of hospital since july.
He is on oxygen 24/7.
He has just 26% lung capacity left.
He is unable to walk slowly for more than a few steps without being breathless which can in turn cause more irreparable damage.
We use a wheelchair to go anywhere and he often falls asleep.
We are limited when out, by oxygen cylinder levels(roughly 2hrs) or by the battery on his portable oxygen concentrator(also roughly 2hrs).
Also severely limited by his excitement levels… If he gets excited(eg. sitting quietly but surrounded by friends is usually too much and sadly it mostly needs avoiding)this can again cause issues/damage.
Medical Equipment…eg. own wheelchair that Mason can personalise and decorate,
extra batteries for his portable oxygen concentrator, quality portable monitor for trips…
-Supportive equipment… Shower chair, shower head/arm modifications, Aircon split system, scales, bottles, jugs…
-Bills… Phone, Gas, Electricity, medical rental items … all behind due to hospital living expenses…
-Medical bills… private specialists when needed, Dental(My ongoing pain is preventing me sleeping a majority of nights), hospital living(food, parking, fuel, entertainment/distraction), scripts and over the counter medications….
-comforts… we would love a small, safe & slow farm 4 wheeler for mason to plod down the laneway on (with his machine)when having a good enough day to visit his pony. Family dog being assessed (& needs regular clipping/washing) to visit Mason in hospital.
-Supports for Connor and Mason who are having trouble with such a sudden and major change, ongoing treatments(Physio etc) for Connors joint pains…& ongoing support for Connor into the future
-Memories…Our specialist has now suggested we draw on any supports we can to go and safely have some fun and make some memories…So for example; fuel for trips, $$ for tickets, $$ for travel and accommodation if well enough...
Thank you all
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