Day 3 - A taste of the PICU rollercoaster

We had been told to expect that things can change from minute to minute over on PICU but Jessica had been so settled on day 2 that we had forgotten this a little. She had a good second night and in the morning, the plan was to remove her breathing tube later that day and see how she got on without it. Jessica is being given prostin to help keep her ductus arteriosus open so that oxygenated blood can get around her body but this needed to be reduced before the tube was taken out as it can reduce her respiratory rate. However, having woken up a bit more in the morning, Jessica wasn’t quite so settled as she had been the previous day and her oxygen saturation levels were fluctuating more than they had been and there was some concern that this duct wasn’t staying open so well.

When we arrived to see her, the team was considering whether to take her for more surgery to put a stent in the duct to help keep it open or even whether to bring the Norwood procedure forward. We hadn’t been prepared for this and so were quite anxious about the prospect of more surgery so soon. Thankfully though, the cardiac echo showed that the duct was staying open but an ultrasound scan was showing that the left lung was looking ‘wetter’ than the right indicating a difference in blood flow between the two.

Whilst the team on PICU weas discussing the implications of this with the cardiac team, Jessica was sedated again and had the drains removed from her chest and was much more settled after this. Dr Salmon, the cardiologist came over to talk to us – they weren’t too worried about the situation with the lungs, particularly as the fluid wasn’t on the lung where the veins had been repositioned and just would continue to monitor things. Jessica would stay intubated for the day and the plan was back to considering the Norwood procedure or possibly a stent early next week.

It was a relief to see that Jessica was looking more settled and to know that we weren’t going to have more surgery that day. Her breathing was much better than it had been in the morning and her oxygen levels were stabilizing again which was reassuring. She had been nil by mouth for most of the day to allow for taking her breathing tube out or going for surgery and this gave Louise a chance to catch up on providing some milk so that Jessica could finally have some feeds that were just mummy milk once she was able to be fed again.

In the evening, Jessica got to meet Auntie Maxine and Auntie Loraynne for the first time and seemed to be quite chilled out and settled.

We were given a room over near PICU for the night and it has been good to be able to be so close to Jessica rather than going back and forth between the two hospitals (not that it is far but it is easier to be just down the corridor and also means Louise can be with Jessica each time she expresses which helps with milk production). The plan at the moment is to see if Jessica’s breathing tube can be taken out today but we are learning to take things very much as they come!