Thursday, February 28, 2013

To Fontan and Beyond

I'll write this as fast as I can because John and I are just home for a little while as it's quiet time in PICU where Louise has found herself with not much warning.  It all happened on Tuesday when we got a phone call at about 3.15 pm to ask could we be in the hospital for 6 due to a cancellation and Louise's operation would be Wednesday, which was yesterday.  Of course we agreed and following a rushed packing of bags and showers and baths off we went to face Louise's biggest challenge so far.

First I'll tell you that our cardiologist told us on Monday to be under no illusions as to the extent of this's about as big as they get and much bigger than Louise's last two.  The recovery is much more complicated with lots of pitfalls, any of which Louise could fall into...including one...we won't even go there...

So Louise went down at 1.40 pm and after two hours to put in her central line and one and a half hours to get her onto bypass (I'm positive these problems which she has had every time are due to her PHACES Syndrome and the anaesthetist agreed it was probably so.) her surgery went as planned and we got to speak to the surgeon at 8.15 pm while the rest of the team were finishing the operation, sewing her up etc.  He's happy with how everything went and even went so far as to say her lung pressures which are VITAL are the best he has seen for years.

The specialist nurse spoke to us then and went into all the details and the plan for the next while.  The next week is going to be very very hard for Louise  as they are going to have to push her to get up and about faster than any other operation as it is important for the Fontan to kick in.  In fact they often ask the parents to leave for a while as the physiotherapists need to get her to work hard which can be heartbreaking for the parents.

We were told it'd be another half an hour, just long enough for us to go to the hospital chapel and spend some time where it's important.

Then at 10.15 pm the anaesthetist (did you know they are also the ICU consultants, it's their job to keep these children alive..oh wow!) rang and said he'd bring us in to see her.  He looked wrecked and laughed at the difficulties she had presented...all in a day's work I guessed.  Those guys deserve every penny they get.

Our little treasure was out for the count though the nurse told us she had woken just to say she wanted her Mammy.  She was aware of us on and and off and the rest of the time away with the  fairies.

Today she is much more awake.  She had a good first half of the night and then spent the rest of the night and the morning vomiting.  She's a poor miserable little pet...just wants a big drink and can only have a few sips.  She has never been refused a drink in her life before (that she remembers) so that can't be easy for her.  She's on a bit of support oxygen just with the nasal prongs but she's not in any pain.

 The surgeon came around and said he's very happy with her...her lung pressures are continuing to be excellent.  She won't get any of her drains out today as she's still producing a lot of fluid.  I have to bring up her slippers this afternoon as they are going to try and get her up for a walk.  Then she can get back into bed with her own home-scented sheets and pillowcases.

All the same, when we came, all the ICU staff knew all her sisters' and Peter's name and that it was John's birthday...Louise had told them!! I didn't even know she really knew that herself!  So even half doped on morphine she's with it! That's our girl!!

So...of course...continue to pray for our little trooper.  The surgeon's job is more or less finished...hers is just beginning.  And also for her siblings.  They're missing her and it can't not be stressful for them.

Jennifer xx


  1. Can't stop thinking about what that we soul has been through. We will continue to pray for her recovery and of course the family. The Christian Police Association put up an update and have asked for continued prayers for you all. Love, Steph xxxxxx

  2. Praying for little Louise and you mum and da....*hugs*

  3. What a precious little one!! Praying for her and your whole family!