Joe Joe Update

This is cut and pasted from another site I go on a lot Just to update what been going on with my little man.

24th December to 16th Jan

We have been back in PICU and is heart function is now really poor he wont be home for christmas and lets just say next christmas might not happen if he doesnt turn it around soon,

Please can I have all the vibes possible for an improvment on the next echo todays was the same...

A mummy whos heart is braking...........


We are in ICU
Joe has 2 percent heart function but is fighting ventilation.
Its still touch and go, waiting to see if drugs shipped from abroad work.
He may have a terminal condition that has caused his heart to fail we are waiting for results of a biopsy
He may also need to be transplanted.
He has amazed everyone as his condition is thought to be unsurviable.
We are taking it a day at a time now

Got woken by the phone at 2.30am to say he had vomited so he was back on IV glucouse due to the metabolic condition. (he cant be sick as he can have low blood sugar and develop brain damage fast) this am he was miserable crying in pain and fighting the vent his tummy swelled up so they did an x ray and he was full of wind literally so full you could feel his bowels through his skin, doctors did not want to give drugs for it so I had to spend the day trying to shift it massage cycling the legs holding upright which with a ventilator and four lines is a task.

Hes happier now after throwing up bile and wind, so we have to hope he can take his feeds from tomorrow.

We have an eight day wait and counting to see if its a terminal condition which is a living hell because he is so well looking on the vent.

Harriet is doing very well considering all that is going on.
Well hes not back on his feeds It looks like he has NEC basically it could mean his bowel could rot away, lots of antibiotics oh yes and a doctor who wants me to decide if we ressusitate if he arrests any ideas on that one ladies I feel sick just considering it but I also know if his heart stops with all the will in the world it wont restart its just too damaged.

we need a miricle now in the form of him either recoveing from the nec or his heart getting stronger so he would survive bowel surgery.

We have some but not all results back its not a respirtory chain defect which is good news as they are not compatable with life. Unless it is a wierd disorder that is very rare its either VLCAD the original diagnosis or barth syndrome which means cardiomyopathy (a large heart) very poor immune system and learning difficulties.

His heart is very poor and stress still causes him a heart rate of
210 plus per minute which could cause his heart to stop which is so scary.

its still a day at a time and he will be ventilated for the forseeable future.

but his echo was slightly better to....

small steps small steps.


Will Continue in my next post............

Miricles are possible they happen here every day......