Update on Charlie

Well, we have an answer of sorts (we think!)

Looks like our Charlie might make it into the medical journals ! ! ! !

He has a blood borne virus, PVB/PBH (or something like that) I dont remember the exact initials it was a blur.

This thing he has is in his blood plasma, and its killing off his red blood cells faster than they can reproduce, Its very very rare, there has only been ONE other known case of it in the UK, up in Glasgow so the Drs are on a steep learning curve here too, they have been in contact with the other patients Dr to see exactly what he did, but right now Charlie is the only known case in England to have this **** thing! (Which if it wasnt so damn scary would be more impressive to us!)

They have moved him into PICU (pedeatric Intensive Care) and he has 2 decicated nurses with him 24 hours a day, an ICU nurse and a Renal nurse (poor girls arent allowed to move from the room for their whole shift!)
They had him sedated all day, he is on morphine and intravenous Anti-Biotics (one of which I recognised cos I have just had the same one myself) they have been using a dialysis machine on him for 5 hours today & then they are going to do a plasma exchange, only cos of what he has the machine they need to use wont do its job properly so they have to get a technician in from the company that make the machine tomorrow to 're-calibrate' it so it does what they need it to do - basically blood plasma is clear, but Charlies is a dark colour right now so the machine thinks it processing blood cells not plasma n it keeps failing, so tomorrow the technician will (in the nurses words!) "Give it Amnesia" so it forgets what it thinks its seeing and sees what we need it to see (I didint understand a word of it !)

They said Monday night was touch & go, because they werent sure what the problem was they did a blanket treatment, and his Pottasium levels were sky high, normal is 3 to 6.............. Charlies were on 12 to 13.

We did manage a little Sleep, I fell asleep at 1 ish, woke up at 3 n Aly & I were having a long chat via phone between 3 & 4 am, I sent her to try n sleep at 4 am, n slept from 4 to 6 ish myslf then woke up again, went into work but they sent me home again at 11 ish. so we were at the hospital all day.

OK, this is a little disjonted sorry, I fell asleep typing it at 3am monday night, its now Tuesday morning & I just woke up !

I just spoke to Aly and his potassium is down to 4 - the high end of normal but at least it IS in normal range - He had a good night but Aly said he had the nurses laughing in the night, they lightened his sedation to move him a bit and allow him to move his muscles himself so he didnt get sore or stiffen up ............. LOL Only this is Charlie remember.......... he didnt just move 'a little' he flipped himself over on all 4's & tried to escape from the bed an pull all his tubes out !
LOL n then when they tried tried to turn him back over he fought back & wouldnt lie down again till they put his sedation back up! - Aly said the nurse met her & Chris at the door laughing and said "you didnt warn us how strong this little one was........... it took 4 nurses & an intern to hold him down and distract him while the full sedation kicked back in!"

hehe he's charming the nurses even tho hes sedated - they do a lovely thing at Pendlebury........ whenever a nurse enters the room before they speak to ANYONE else in the room they go over to Charlie, touch him and say "Hello Charlie, my name is (whatever it is) and I'm a nurse, I'm going to help Mummy & Daddy look after you today".............. or if they go out of the room & come back they go over & say "Hi Charlie, its (xxx) I've come back to look after you again" - and every time they do, our little charmer smiles at them or flickers his eyelids or moves his hand, which they think is lovely cos he is responding to them.
I was realy impressed with that cos it makes sure that Charlie hears voices talking TO him, not just ABOUT him, n I love that they talk to him first cos then he knows the voice right away.

Anyways got to go, got to go see the vampire myself now, going to pick her brains about charlie while I;m there too, shes a nice vampire she doesnt hurt too much!.

Anniie