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.

Thursday 11 January 2018

Post-Fontan recovery: Day 13 (Ocean Ward)

It has been amazing to see the changes with Jessica over the last couple of days. She’s gone from being restricted to her bed and chair and having lots of tubes and wires in high care to being able to move about the ward with most of the tubes and wires removed. Yesterday saw another big reduction in the tubes and wires. Jessica came off the oxygen altogether in the morning and had the remaining chest drain removed in the afternoon. We’re just left with one cannula for her heparin and an NG tube.



We were told last week that Jessica would go on warfarin after her chest drain was removed and the heparin stopped. The decision to put her on warfarin was due to her having sluggish flow in her inferior vena cava (the main blood vessel going from the body to the heart). However, the echo she had a couple of days ago shows improved blood flow and so the team have decided to go for aspirin instead. This will be much easier to manage at home than warfarin! The heparin needs to continue until she’s had three doses of aspirin and then that cannula should be able to come out.



We had hoped that her remaining cannula would hold out a couple more days just until the heparin finished. Unfortunately it stopped working last night and had to be replaced. It had lasted well though given it was put in while we were still on PICU. Fingers crossed the new one keeps working and we won’t need any more cannulas put in now.




Jessica has been enjoying being able to get around the ward and visit the playroom again. She spent most of yesterday afternoon sleeping as she was sedated for the chest drain removal. She wasn’t very impressed that she slept through dinner time and missed her fish fingers and chips though! Nice to see her showing an interest in food again. We did have some food in the fridge for her, so she didn’t go hungry!



We are looking forward to Sophie coming to the hospital today. It has been more than two weeks since our girls were last together. It will be lovely to have our little family back together again.
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  1. Plutoniumsox.com11 January 2018 at 11:47

    Oh it's so lovely to read how well she's getting on and that Sophie will be joining you at the hospital today. I bet it will be an emotional reunion.
    Nat.x

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