Our beautiful daughter Jessica was born in September 2011 with a severe heart defect called hypoplastic left heart syndrome. This was diagnosed at her 20 week scan and we were initially told that she was unlikely to be suitable for surgery. However, a pioneering in-utero operation at 28 weeks to enlarge a hole in her atrial septum was carried out and she was able to make it to term and get through her first open-heart surgery at just eight hours old. Jessica underwent five more surgeries during her life. Her final surgery - the Fontan procedure - took place in December 2017. She initially made a good recovery but sadly passed away suddenly on 14th April 2018 at the age of 6. This is the story of a little girl whose half a heart overflowed with love. She was, and will forever be, our little miracle and brought joy to all who knew her.

Tuesday 21 January 2014

Coping with another cardiac catheter



 
Despite being nil by mouth from 6am, Jessica was fairly happy throughout the morning, continuing to enjoy riding the cars up and down the ward and enjoying a trip up to the Children’s Playcentre on G level where a magician was visiting to entertain the chidren (plus there were even more fun toys to play with!) By lunchtime she was starting to get tired and tearful and kept asking for milk. Fortunately the Tweenies and Mr Tumble managed to keep her distracted until we were finally ready to go to the cath lab around 2pm. Sophie had timed her early afternoon nap beautifully and was fast asleep in Jessica's cot so we were able to leave her there and focus completely on Jessica going to cath lab. Mummy was able to cuddle Jessica and sing her to sleep in the anaesthetic room before we headed back to the ward to wait. Sophie sleeping in the cot was also good in that it meant we weren't coming back to an empty cot.


It was a couple of hours before we were able to go over to recovery and be with Jessica.  Jessica was very sleepy whilst we were in recovery but was doing well. She had two plasters on her neck as well as the two pressure dressings in her groin and collarbone from the catheter procedure as the team had attempted to go into her jugular veins which were both blocked and then had to go in via her right femoral artery and right subclavian vein.


Jessica continued to be sleepy for quite some time after returning to Ocean Ward as she recovered and Dr Hayes came to discuss the catheter results shortly after our return to the ward. Jessica's lung arteries are quite small (as they have always been although they are growing with her) but there is no discrete narrowing in the pulmonary arteries or the aorta and the areas where they had balloned last time appeared not to have narrowed again so no ballooning was needed.  The pressures in the pulmonary arteries are not particularly high which is good considering they are on the small side. It is likely that Jessica will need to have another cardiac catheter or MRI before the team consider her Fontan procedure (the next big op) to look again at her pulmonary arteries as they will need more time to grow. The smaller arteries may mean that her Fontan may be put off as long as possible as her lung arteries will need to be bigger to improve her chances of a successful Fontan completion.


Jessica has been doing well since the procedure and has not needed any extra oxygen since leaving recovery. Her sats have been around 75-80 and whilst she has been subdued, she does not seem uncomfortable or unhappy. She has added another certificate for being a brave girl to her collection and hopefully we will all be going home tomorrow.

1 comment:

  1. Well done all of you. Hope you get home tomorrow it's always good to be back in your own bed.. though I suspect Jessica may miss her driving circuit. Elizabeth x

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