The (un)Wonderful World Of Warfarin

Firstly apologies to anybody who follows Louise's story only on this blog. I have updated things on Facebook but I'm sorry I left you hanging in the air wondering whether she's doing well or not. Truth is this is the first time I've sat down in a week. Louise's hospital stay dragged on longer than we'd hoped because of her vomiting problems. The doctors tried and tried to discharge her in time for Laura's Confirmation on Saturday, and twice we got as far as almost making it to the door before having to unpack and kip down for another night. It got to the stage that John was wondering whether the vomiting was actually caused by stress as it always seemed to coincide with a doctor walking into the room. When you think of it, she was in there almost two weeks and in that time nothing good happened to her. The only good thing from her point of view was when the physiotherapist walked her down to the hospital shop with some money tucked in the pocket of her dressing gown to buy a 10c lollipop. That and when my sister arrived in with a bag full of pick-me-up activities which took her mind off her predicament for a while.

In the end, Louise was too sick to discharge or to leave with my sister and so John ended up missing Laura's Confirmation ceremony. We didn't really do much to mark Laura's special occasion but we'll make up for it.

Well we got her home that evening and it was like bringing home a new baby we were all so excited.

Since coming home it's been a mixed bag emotions. Louise's operation seems to have been a great success but when I wrote that the surgeon's job was finished and Louise's had just begun...I was right.

When John heard Louise would be going on warfarin his heart sank. It didn't bother me much as I thought 'shur half the country's on warfarin, including my own father, can't be too hard.' When the two phlebotomists commiserated when I told them she's be on warfarin I began to get a bit more nervous and when the specialist nurse sat down with me to explain it all in detail, including the necessary mollycoddling she will need if playing outdoors, I realised the imminent future was going to be none too easy. In the week Louise has been on this medication she has had nothing but constant hospital blood tests..some even daily. Apart from the drive to Dublin and the time waiting in the blood clinic and the fear that she is developing at the sight or mention of the hospital...it's getting more and more difficult to find an intact vein in her skinny little arms. It is heart wrenching to witness it, not because she screams the house down but because she's so stoic and sorrowful with huge tears rolling down her face, it would break a heart of stone. Actually it's struck home to me the horror of adults who deliberately hurt little children...it truly is a sin which cries out to Heaven for vengeance. No child should be hurt . Sadly some children need to be hurt for the good it will bring about but to indulge temper on an innocent child, deserving of nothing but love is just chilling.

Warfarin is such a troublesome drug and there is no alternative available for children. The dose is different for each person and it takes a while to get it right. So far the slightest adjustments of Louise's doses have flung her INR levels to dangerously too high or dangerously too low. In fact when they rang us last night we figured they were going to admit her to hospital had we given her a dose at all yesterday her level was so high. I think they can give IV vitamin K to counteract it.

Today is the first day her reading has been anywhere near as hoped so we'll see what happens over the next few days. Also we have just got her handheld finger-prick blood testing  machine which will make things a little easier. Of course, warfarin is a blood thinner and so bleeding takes that bit longer to stop...our cute little lady has discovered the art of 'blood painting' after her last finger-prick test...only Louise!! At least it distracted her from her distress, maybe I'll have the blank sheet of paper ready for her bribe next time.

Our other problem is that although up to this, Louise has been so compliant with taking her medicines, she has now developed a terror of every medication except for one familiar one she was taking before the operation. Every dose has become a battle and last night when she saw it coming she started retching, God love her. Practically none of her medicines are actually designed for children and are all very 'mediciney'. We could pop a sweet into her mouth but we're also supposed to be caring for her teeth as a cavity in a child with CHD can cause a fatal heart infection!

This picture doesn't even feature her blue warfarin!

On top of everything else, because of the two strong diuretics Louise needs to take to place some of the heart's workload onto her kidneys, she's back in nappies full time after being completely toilet trained. This was under doctor's advice, and rightly so. The only thing is it's embarrassing for a child to have so many accidents, to miss the toilet and to need nappy changes more often even than a small baby. Her little bum is sore too probably due to my own carelessness with putting on sudocrem because I've never needed it before with an older baby. There's a lot of learning to be done by all of us I suppose.

So though the 'worst' is over and that cloud which has been on our horizon for the last three years is gone...we're not quite there yet. My eyes have been opened to what the lives of parents (including many who read this blog) must be like who have constant therapy appointments of every sort with their children. I have found this time around very humbling from a lot of different perspectives. I'm once again humbled at the sight of my little girl facing and managing a cross that most of us would run from at full speed. I'm humbled by my inability to meet the needs of all my children all the time. I'm humbled by the knowledge that certain of my children have silently co-suffered with Louise. I'm overwhelmed by the goodness of others and the goodwill we have been at the receiving end of...you will never know how comments on Facebook, Mass cards, prayers, gifts and messages have helped us all through.

And lastly, something so beautiful I have to show you...

It's bigger than it looks in the picture, it covers Louise easily and it's so soft.

Every heart child that passes through Paediatric Intensive Care Unit in Ireland receives a hand crafted blanket made by the old ladies of the country. Louise got hers with a little name pinned to it...Winnie. (I have the rest of her name and where she's from). Winnie...Winifred..from a little village in the West of Ireland. Nobody under 80 in Ireland is called Winifred. It was only last night I read with tears rolling down my face the page with the information about these ladies and what they do. It originated when Irish children had to go to America for heart surgery. The blankets were sent with them for comfort from home. They continue it because of the realisation that heart children still need comfort. Winifred, thank you, thank you!! I love this precious blanket and we will treasure and care for it with the same love you put into making it for my little battle weary soldier.

Jennifer xx