Post-Fontan recovery: Day 1 (PICU)

Jessica had a good first night after her op. She had a few irregular heartbeats, so the pacing wires had to be put on. She also needed a bit of chest physio and suction to remove some gunk from her chest. Her sats have generally been very good – up in the high 80s and we have even seen them staying in the mid 90s for a few minutes! She was still quite blue when she first came down to PICU but her colour has rapidly improved since then. We are amazed by her colour, having never seen her quite so pink before!

Michael and I took turns to stay with Jessica overnight so we could each get a reasonable chunk of sleep (plus the periods of dozing in the chair next to her bed!) It was lovely to see how happy the consultant looked when he checked on her in the morning. He’s looked after Jessica before and she’s added a fair few grey hairs to his head on our previous PICU stays! To see him look at the monitors and beam at her was so lovely.

The plan in the morning was to hopefully try to extubate later that day. However, Jessica continued to have quite a lot of chest secretions and so the decision was made to keep her sedated and on the ventilator for the time being. She is coughing up the gunk quite well and has had regular chest physio to help with this. She has had the occasional wakeful moment and her instant reaction is to try and pull the tubes in her nose out when she starts to stir! Thankfully she’s not been successful in doing so at the moment.

Jessica had a little bit of swelling around her central line yesterday and needed to have another line put in. Overall she was pretty stable yesterday though. She’s on a whole host of medicines through all the various lines, and these will gradually be weaned off over time. At the moment, it’s still very much a balancing act to try and keep all her readings where they need to be.

Michael and I have been making sure we get fed and rested as much as we can while Jessica is sedated and settled. We both had a full night’s sleep at the Ronald McDonald house last night and feel much better for it! Sophie is also enjoying her sleepover at Nanny and has been having lots of fun with her cousins. We miss having her with us but it is good to be able to completely focus on Jessica at this time.

This morning, Jessica’s sats were a little lower. She had an ultrasound which shows there is a small pocket of fluid on the left side, which will hopefully get reabsorbed. Her left lung also looked a little deflated on chest X-ray although thankfully there is no sign of any chest infection. She’s currently lying on her right side to try with the pressure on the ventilator having been increased a little to help reinflate her lung. The pocket of fluid is small at present and will hopefully reabsorb, although if it increases, she may need to have another chest drain put in.

We’re all taking it minute by minute at the moment. Jessica has a tendency to throw curve balls in the way of recovery and I think the team are quite aware of this and prepared for little surprises! At the moment, the plan is to continue to keep her sedated and on the ventilator. She’s continuing to have regular chest physio to help with the chest secretions. Overall though, she is heading in the right direction and the team are happy with her progress so far.