A reminder of the PICU rollercoaster

We have been reminded today that life on PICU is a bit of a rollercoaster ride and that one stable day does not necessarily mean that things will continue on an upward trend without a few hiccups along the way. When Louise went in to express her milk at 4am, Jessica was quite unsettled and agitated which was causing her blood pressure and heart rate to rise. None of the attempts to calm and settle her down seemed to be having any effect and by 6am, the team on PICU decided that it was safest to sedate her again and put her back on the ventilator.

Jessica has had a chest X-ray and an echo, neither of which have given any particular indication as to why Jessica was quite so agitated – it may just have been that the ventilator was taken out a little too soon and that once Jessica started getting stressed, she got into a bit of a spiral and worked herself up and then couldn’t calm down again. Her blood pressure and heart rate were back to normal once she was sedated and we are hoping that perhaps she can come back off the ventilator in the next couple of days.

The second bump on the rollercoaster ride came later in the morning, when we were told that Jessica had something called a chylothorax which is an accumulation of lymphatic fluid (chyle) in the lung cavity. This is a common side-effect of surgery as the thoracic duct, which is a lymphatic duct, can be damaged. The leakage of chyle into the lung cavity can cause damage to the lungs and so in order to stop this, Jessica needs to been put on a reduced fat formula called Monogen for around six weeks, in order to allow the duct to heal. In the meantime, she is unable to have any breast milk due to the way the fats in breast milk break down.

Whilst we understand now why Jessica has to have the Monogen, Louise was still quite upset by this as breast feeding is something that is very important to her and has been one of the few things she has been able to do whilst Jessica has been on PICU. As Louise has been expressing regularly to maintain her milk supply, we currently have quite a surplus of expressed breast milk (EBM) (about three litres currently!) and Louise is hoping that she can donate this to the milk bank in order to help other babies. She is also intending to continue expressing her milk as hopefully Jessica will be able to breastfed again at some point in the future.

We had a visit in the afternoon from Grandma and Grandad which was lovely. All in all though, it has been quite a stressful day, but the main thing is that Jessica is still recovering well, even if there have been a few little hiccups on the way!