Friday, March 22, 2013

3rd Birthday & A Hospital Sojourn.

Louise had a lovely birthday. We decided it would be understated as she's still in recuperation and not really up to a big event. None the less we had plenty of visitors and Louise was definitely princess of the day.

Dancing with cousin Amelia ♥

(what do you think of Isabelle's Slayer t-shirt? 
John ordered himself a child size by mistake!)

I got this idea from Pinterest.

Present from Granda

John drops the children to school most days giving himself enough time to pop home for a little chat before he goes to work. It was during this chat two days after Louise's birthday we began to discuss her blueness. I have been noticing that she is bluer now than she was before the operation. John thought so too so we agreed I should ring Louise's specialist cardiac nurse just to ask whether this was expected. I know the Fontan operation is not one that completely kicks in straight away as it is a totally different circulation system for her body including the liver, lungs and kidneys to adjust to so perhaps the blue tone is normal. The nurse told me to come up and she would check her oxygen saturation. A few hours later, seeing Louise's reading of 73 when before the operation it was 85 the nurse said she'd ring the cardiologist who immediately decided to admit her overnight for a thorough check out. Here I was with no bag, no purse as I couldn't find it going out the door and stocked up with nothing except two €20 notes I'd swiped from Laura's confirmation money.

So echo, ECG, X-ray, more bloods..she has developed such a terror of bloods that she literally took to her heels when her name was called and ran as though escaping a fire. She managed to almost reach the end of the corridor before I caught her! Finally up to A&E to wait for a bed on the ward and to be admitted whereupon the triage nurse put her onto oxygen as she was so surprised at her low sats. Then up to the ward to begin her 24 hour heart trace.

Anyway to cut the story short, everything to do with the operation is fine, thank God. They figured her medicine prescriptions were all too high for her and drying her out excessively, and would also explain her backward step in toilet training. Her INR (warfarin related blood thinning levels) are all over the place with no pattern emerging so far. To explain the blueness, the fenestration they made in her heart as a release option is completely open, which is neither good nor bad. In some children the fenestration isn't used by the body but hers is being completely used meaning she is still getting a lot of de-oxygenated blood circulating in her body. This explains how she is blue but not breathless like before. At the moment he is happy enough to allow her sats to be in the low to mid 70s and he'll review it later. The hole will either close naturally or they will surgically close it in time.

Well it was just a blip and I'm thankful nothing sinister has shown up. It's just an indication that Louise will never run a marathon but then again...lets find out what other amazing things she'll be able to do. We love her to bits, blue, pink or striped.

For the immediate future our plan for Louise is to get her psychologically back on an even keel.  To be honest I think she's totally traumatised.  She's clingy, she's afraid to let me go anywhere, she's fractious and her fuse has shortened by about 90% and she had her first ever screaming episode on the floor of TKMaxx which we visited with the younger ones to get her some birthday presents...that is a completely new turn of events, her nappy training is out the window and her fear of blood tests and medicines is now deep seated.  None of this surprises me and I think it will take a little while for her to get back to her old self.  She really has been through a physical, emotional and psychological war and has come out alive but battle weary and with scars which will heal with the medicine of the love of her entire extended family.

This morning Louise was helping me to put away the groceries. As we were putting some caster and icing sugar into the cupboard I told her it was for baking for Easter. And because I think no child is too young to learn to love God I said

 'You know what Easter is? Some people hurt poor Jesus and he was very very sore...and you know what? He made Himself  better and now He's ALIVE..and that's EASTER!!'

Her face lit up and with wide open eyes she asked me

'And did I helped Him?
Did I help make Dee-zis better?'

I was able to reply without a moment's hesitation and without a trace of a lie..

'YES Louise!! You definitely helped Him. You helped make Jesus better.'

Jennifer xx

Friday, March 15, 2013

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'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 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 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

Monday, March 4, 2013

How To Avoid Taking Yucky Medicine

And if they do succeed in getting it into you all you have to do is vomit it all up...every time.

Saturday, March 2, 2013

Disappointing Day

Louise didn't get on so well today.  After her amazing effort yesterday she sat out in the special little armchair for a few hours where she dozily watched the Wiggles until she fell into a sound sleep.  That was during quiet time so I went home for a while.  While I was there PICU 1 (High Dependency) rang to say they were going to sedate her to remove the mid-line drain, the biggest of the three. When that was removed she could go to the ward.  The wards are much more specialised now so children can spend less time in PICU.   So we waited a while and went on up with the three eldest children, the younger two going to a friend's house.

When she spotted her big sisters Louise burst out crying with huge tears.  I think she was just overwhelmed with her situation.  Over the next few hours she basked in their attention and they even got a brief smile.  I hoped that it was the lift that would boost her recovery.

Unfortunately, the night didn't go so well.  She vomited up everything she had managed to keep down.  It was quite a task to clean all her wires and drains.  While the nurses were changing her bed I managed to get my first cuddle with her.  She just snuggled in so pathetically like a little broken bird.  As we were moving her back into bed I managed to accidentally tug at one of her drains...she screamed so loudly.  My stomach flipped in the way it does when you see a child hurt.  To be honest I was completely traumatised to have caused her extra suffering.

On the good side here is that as I was stroking her back I was completely amazed at the realisation that there was no roughness...the gritty whoosh that was her heartbeat is GONE!!!!

Later in the night, due to the medications she had, she completely saturated her nappy (she's more or less out of nappies at home)  as well as the bed.  Another bed change but they managed to do it without lifting her right out.  I don't think I got too much sleep as she wanted me to hold her, and stay close.  She slept more or less all night but with frequent wake-ups to call me.  By morning I was feebly trying to convince myself I was asleep while at the same time reaching up to stroke her hand.  From about 6 am I noticed that her tight swollen little hands were feeling hot.  Sure enough by morning she was running a temperature.

So of course that meant sending urine and bloods for culture They can't be taken from her central line because of something they put in there which would contaminate the sample.  She has barely a vein left that's available for bloods and the sample needed to be 6mls x 2.  The doctor tried and tried but fell short of the required amount from the only veins he could the instep of her foot,  she cried and cried telling me it was sore...and when he had gotten the last drop he could, she had the good manners to thank him.  Dis-heartedly he sent off the samples hoping it would be enough.  They phoned down this evening apologising that no...there wasn't enough...they have to try again in the morning.

So all day Louise was listless and miserable.  The physiotherapists came down hoping to be able to walk her to the playroom to continue her therapy.  One look at her told them she wasn't up to it.  They even decided against trying her in the little armchair.  All she managed was to blow a few bubbles through a straw in a cup of water...this is important to release the secretions in her lungs.  After a few puffs she fell asleep.  They'll try again tomorrow.  In the afternoon I found an iPhone app where you blow out candles and we did that as much as we could with her..  Her only lift was looking at a little video her cousin sent her wishing her well.

John came up with all the children except Rebecca who had gone with her friend present shopping for Louise.  The Tinker-bell balloon she had so eagerly anticipated got barely a glance.  As the nurses were changing her sheets yet again after a little (or big) accident, she sat on John's knee.  I think it was just the secure arms she needed.  She dozed on and off.  The good thing was that in that upright position her oxygen saturation levels rose to the low 90s which is great.

John is staying  with her tonight.  I think that will help her because when I'm there she's clingy and won't let me even stand up without worrying I'm going...which makes using the bathroom a bit difficult.  She doesn't do that so much with John and so is more relaxed.  Her temperature has risen a bit again but luckily the cardio-thoracic registrar came around tonight and said she's not worried about the fever, it's not too high and is typical enough. She told John they could remove a drain tomorrow then looked at the volumes and said no it won't be coming out after all.  Seems this drainage is complicated with Fontan.  It's interesting how many nurses and doctors have said...'well she is a Fontan'.

So Louise still has some way to go.  I'm at home and heading up for a good night's sleep.  I'll be back to staying up in the hospital tomorrow.  She has come so far, I know she'll conquer this final mountain.  I'm praying the prayer of the two Andes Survivors  who tramped off into the mountains to look for help not knowing whether they were walking in the right direction or further into the Andes...'Lord, make it difficult...but don't make it impossible...'

Tomorrow is another day.  I think it will be better.

Please continue to entrust Louise to God's loving care.

Jennifer xx

Friday, March 1, 2013

Every Day I'm Shufflin'

There are no words to describe this moment, so I won't use any...

(If you click on the link to YouTube it's slightly better quality)

If you want to leave a comment see can you put it in the blog instead of Facebook so Louise can have it forever.

Jennifer xx