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

3 comments:

  1. Thanks for the update. I'm happy that Louise is home with family for this Easter, and I know dear Jesus is enthralled with her-a great helper she is, I'm sure. Your husband seems like a fine person too, Jennifer. Reminds me a lot like St. Joseph. Best wishes to your entire family and have a happy Easter 2013!!

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  2. What a little angel! Thank you for this wonderful sharing of Louise's story.

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