Monday, March 29, 2010

Gone fishing!

Charlie's quite bright again this morning - he ate a good breakfast of
yoghurt, Cheerios, a fruit bag and a packet of Wotsits! (Nanny has
just gone to get a coffee with strict instructions to bring him a
Twister ice lolly on her return!)
He's drinking well too, and will be having McDonalds for lunch. This
is good because it has lots of calories in it, but also because the
high fat content will let us know whether Charlie has one of the
complications of Fontan surgery - chylothorax. You may have noticed in
the pictures that Charlie has three chest drains in his tummy, which
are draining fluid from his chest cavity. However, sometimes during
surgery a gland gets nicked, which then leaks a fatty substance called
chyle. If this happens, Chas will have to go on a totally fat-free
diet for six weeks, which will make it difficult fir him to regain any
weight. (Plus it's also pretty difficult to cater.)
The nurses are keen for him to have some fatty food, because this will
start the chyle flowing, if it's there, so we'll know what we're
dealing with. It's fairly common post-Fontan, and isn't really a
problem, more of an annoyance, which we'd rather do without. So we'd
really appreciate your positive thoughts and prayers that Chas will be
free of chylothorax.
Mr Brawn, Charlie's surgeon popped by before, and was very pleased
with how he's doing.
We've also just had the big Monday morning doctors' round, and again,
everyone seems very pleased with how Charlie is doing.
He has been started on warfarin now - the blood thinner he'll be on
forever -and his heparin infusion (which dies much the same job) has
been stopped. His blood thickness measurement is known as his INR, and
the medics are aiming to get his INR between 2 and 3 (A normal INR is
1.) Today's INR reading was 2.9. The doctors were planning on
removing his central line (in his neck), his external pacing wires and
ONE of his drains today, but because his INR was towards the top end
of acceptable, they didn't want to start pulling lots of wires today
because of the risk of bleeding.
So the plan is to reduce his warfarin level tonight, and if his INR is
low enough tomorrow, they'll take out his central line, pacing wires
and TWO drains - all being well.
They will give him some medicine to sedate him for the procedure
(which has the added bonus of stopping him remembering anything about
it afterwards.
We'll be getting him out of bed in a little while for his first walk.
He's just been playing with a little clockwork fishing game - here's a
pic. Hopefully I'll be posting a pic of him on his feet before too long!


Anonymous said...

Busy morning but all heading in the right direction. Charlie you are a star! Hope the warfarin is settled soon x

sandra said...

glad to hear Charlie is still doing well
positive vibes still coming from us all