Joe was born at 6pm on 20/10/08 weighing 5lb 10oz he was born emergency C section as despite an attempted ventouse he would not fit through my pelvis.
It was an experience a thousand times better than Harrys birth and we went home after three days.
On Tuesday 11/11 I work to a baby struggling to breathe we went to the emergency doc thinking be had a chest infection but his chest was clear so a baffled locum sent us by ambulance to childrens ward.
The reg on duty thought it was an infection so a line was put in and he was given antibiotics before being taken to HDU the doctor decided his breathing with far to shakey and an aneathatist was called to tubate him she did this while he was awake as she was worried an aneathetic would be to much then various lines where put in.
Next an X Ray was ordered which showed a heart four times its normally size.
Thats when the PICU at the evelina childrens hospital was called and the decision made to transfer him to London by retreval team.
The next two hours were hell as they battled to stablize hime prior to the PICU team arriving he kept forgetting to breathe so he was then fully ventilated not just pressure assisted.
The PICU team arrived and a wonderful nurse consultant took charge got a central line in and spent the next hour prepping him for travel we then left under blue light for the evelina we travelled the fifty odd miles in approx twenty mins through early rush hour traffic and his was transfered to the PICU.
We were told it was most probably a valve issue in his heart caused by a congenital defect so an echo was done by a brill constultant.
His heart was strycturally normal and that was very bad news cardiomyopathy in babies is very hard to treat but they would give it a go, he was given immunogobulin to fight infection and drugs to deload his heart then blood was taken and he needed to be tranfused as they took so much.
The next twenty four hours were hell if we touched him he arrested we were afraid to breathe over him in the end then at 6pm on the wednesday we got a diagnosis.
VLCAD a metablic condition where joe does not have the enzyme to digest long chain fats.
He was put on special milk and drugs to remove fluid from his system slowely he improved was weaned from the ventilator and after stablizing his diet we got home after three weeks in hospital.
He has to be fed every three hours and cannot fast as fasting can lead to brain damage or death this will be followed by a very low fat (vegan) diet and he will be fed by pump overnight until his teens.
I am exhusted due to very little sleep no more than 1.5 hours at a time. We are just adjusting to living with a child with a life threating illness.
Harrys okay just grumpy and despite everything a bit of home ed is going on.
Will update a bit more later on.
Rachel Mark Joe and Harry.
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6 comments:
You're so together its amazing Rusty. More power and love to you.
Jo xx
first time I've been by in ages, and what a post to find. Many many hugs go out to you all.
I am just wandering round the ring and saw this. Many hugs and love to you all and I really hope that Joe makes stays strong.
What a worrying time for you, now and for the future. I can't imagine how you're all feeling, but I hope that time will help you adjust to a life you weren't expecting and that it's as happy and full as it can be :-) Much love to you x
Oh goodness, just catching up and read this - what a scary time! I hope that things are getting better - hugs to all of you.
gosh, what a massive piece of news your son has started his life with.
Wishing you all the best as a family. xxx
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