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.

Wednesday 21 December 2011

Withdrawal symptoms

Jessica is now off the ventilator. She was on CPAP for a short while yesterday and is now having oxygen through opti-flow nasal specs. We had a brief moment between changing oxygen delivery method and putting a new feeding tube in to be able to see her beautiful face without all the tubes! So far, she seems to be coping very well without the ventilator.




However, as she has been quite sedated for most of the time since her operation last week, Jessica is experiencing some withdrawal from these drugs and so was very awake throughout most of yesterday and quite jittery. Despite looking completely exhausted, she was really struggling to fall asleep – she would close her eyes briefly and then would be very wide-eyed again and upset. Jessica was also rolling her tongue about which was due to the withdrawal and although using a dummy helped to calm her down and soothe her, the tongue rolling meant that it kept falling out and she would then get quite upset again. She was given some oral sedatives last night but they didn’t seem to have that much effect and it wasn’t until 3am that she finally managed to fall asleep. Thankfully all her other observations stayed normal during this time which was reassuring but it was very hard to see Jessica getting distressed and not being able to do very much to soothe her.

This morning though, she seemed better – her gaze yesterday was very fixed and she would only look at us if we put our faces very close to hers whereas now she is looking around more. The tongue rolling is also less than it was yesterday so hopefully the withdrawal symptoms are starting to ease. She is still on morphine though and so we may have more withdrawal symptoms when she stops having this.

2 comments:

  1. Blimey Louise....your story brings tears to my eyes and I cannot imagine how you both stay so strong for your gorgeous girl. The thought of not cuddling Jack for a week is unbearable. I suppose that is where you are lucky to have your faith to help you through. I wish you all a very happy christmas with lots of cuddles from your beautiful Jessica. Take care. xxx

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  2. Thanks Heather - having cuddles today was just the most amazing thing. Hope you, Kev and Jack have a wonderful Christmas xxx

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