Wednesday, April 07, 2010

Two weeks post-Fontan

I must confess, I had always hoped that by two weeks post-op we would
be heading towards home.
But today, home feels a very long way away.
Charlie is totally fed up, and is at the point where he doesn't even
want the medical staff to look at him, let alone touch him.
He is at the end of his tether and it is so hard to see. I am trying
to maintain my usual no-nonsense approach to parenting, and am tending
to be the one to do the nasty stuff - if the nurses' negotiations to
remove dressings or take tablets fail, it is me who has been pulling
the dressings off and shovelling tablets into Charlie's protesting
And I hate it.
Everyone is telling Charlie to be brave, but for goodness sake - I
feel like crying, so how must he feel?
It is so hard to keep jollying him along when, as far as I'm
concerned, he's got every reason to be seriously fed up.
Today we need to change the dressings over his chest drain sites. For
some reason, when they put the new drain in yesterday, they poked the
drain through a hole in the plaster before sticking it on. Charlie's
INR was a bit high really, so it has been pretty oozy and really needs
I have no idea how they are going to get it off, and I know it is
going to send Charlie right over the edge when they try.
I hate this - feeling so helpless, and having to stand by and watch
while people hurt my son. (albeit that the hurt is necessary.)
And to top it all, we are still no nearer to knowing what is going on
with Charlie's pacemaker, and why it isn't working properly.
The heart investigations team don't know, nor the doctors, nor the rep
from the manufacturer, nor anybody on the international internet site
where they have written about the problem asking for help.
Nobody knows, and I am so frightened that they will have to open his
chest again.
This uncertainty makes it so hard to appreciate any positive steps
forward - his Fontan is working well, the new drain is clearing the
fluid in Charlie's chest so his lung is expanding nicely again - but
if they need to open his chest, we are straight back to square one
again, and it feels like all the progress counts for almost nothing.

Sent from my iPhone


kay said...

Sending you hugs , dont know what else to do /say it's so hard to see your child go through this, i pray that they dont have to open his chest again and that someone will come up with an answer to sort the pacemaker out, thinking of you all so much Kay, Si, Josh and Lily xxxxx

Kristin said...

I hurt for you reading this and I hate it for you. I know words don't ease the pain for you or for Charlie.

Sending positive vibes and hope that the doctors find a way to fix it without opening his chest.

Anonymous said...

Hi Its Annie! Just wanted to let you know how much i am thinking of you, Pete and poor Charlie! I cant imagine what you are all going through!! Will be sending positive vibes and thinking of you as usual!
Love Annie xxx