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.

Friday 20 April 2012

A bit of a bump in the night

Jessica had a bit of an eventful night as her ventilator tube got blocked overnight which resulted in her sats and heart rate dropping quite dramatically and she needed chest compressions to help her heart rate pick back up again. A chest X-ray afterward showed that the position of the tube was a little low and as she has had a lot of secretions on her chest, the team thought that this was probably what caused the blockage. Thankfully it was a short-lived episode and we have been reassured that it is not very likely to recur and there shouldn’t be any long-term consequences.

The chest X-ray did show that her chest was a little clearer and the left lung more open although there are still a lot of secretions in the top of the right lung. The plan is for Jessica to stay on the ventilator over the next couple of days so that she doesn’t have to work too hard with her breathing and she will continue to have physio and suction. A recent specimen has shown that the parainfluenza is still present and it will just take time for her to get through this infection.

Thankfully after the excitement of this morning, today has been a fairly stable day. Jessica has remained sedated and on the ventilator and her observations have generally been within the expected ranges.

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2 comments:

  1. elizabethinchurch21 April 2012 at 11:51

    Well done NHS! I hope the two of you are getting some sleep... If not perhaps Ocean ward would consider sedating you for a few hours?
    Know you are loved. Elizabeth

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  2. Louise21 April 2012 at 21:19

    Thanks Elizabeth - we have been making sure that we make time for sleep and food - and the PICU nurses are very good at reminding us to take time out too! x

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