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 19 April 2012

A step in the right direction!

Jessica had another good night and was quite alert when we arrived on PICU in the morning. She didn’t want to be touched or moved, but was quite happy lying on the cot and playing with the toys attached to the side of it. We had a visit from the surgical registrar first thing in the morning to discuss putting in the vac pump. He explained that it was a simple procedure and that as the infection improved, Jessica would probably need to have progressively smaller pumps put in every few days before them finally being removed and this would be done in theatre each time. We were therefore preparing ourselves for a bit of a longer stay than previously anticipated.

As Jessica was due to go to theatre around lunchtime and was needing quite a lot of oxygen, the team felt that it was safer to reintubate her on PICU prior to going to theatre. Louise has been present a couple of times when Jessica has been intubated and felt quite comfortable to stay; however it took a little longer to intubate this time and Jessica’s sats dropped quite low before the ventilator was in place which caused quite a lot of anxiety. Thankfully they did go back up quite quickly but on reflection, perhaps it wasn’t the best idea to stay and watch!

As Jessica is very good at ‘losing’ her cannulas, the team decided to put a PICC line in for the IV antibiotics as this would last longer but this proved to be quite difficult and so she had a central venous line put in instead.

Nanny arrived just before Jessica was due to go off to theatre and managed to see her for a little while before she went off to theatre. An hour later, she was back on PICU and we had some positive news at last. The wound infection appears to be superficial – there are no signs of infection in the sternum and so she didn’t need to have the vac pump after all. The team had just cleaned her wound and replaced the dressing.

However, a chest X-ray prior to going to theatre has shown that Jessica’s left lung has collapsed again and she has a lot of secretions on her chest as a result of the parainfluenza which have required quite a lot of physio and suctioning and has also meant that her oxygen saturation levels are a little on the lower side. The plan for tonight is to keep her on the ventilator so that she can continue to have physio and suction to help clear her lungs.

2 comments:

  1. All our thoughts are for you Jessica. We hope you have a speedy recovery. Lots of love xx Dorothee, Nicolas and Lucas

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