Post-Fontan recovery: Day 5 (PICU/Ocean Ward)

When I wrote yesterday morning’s update, I wasn’t expecting that this morning would find us up on Ocean Ward! PICU can be a rollercoaster ride at times though and we’ve learned that things can change very quickly, including changes for the better.


Jessica had a really good day yesterday. She managed to get out of bed and stand (very wobbly) on her feet for the first time, with the help of the physios who then helped her into a chair. She spent a couple of hours sitting out in the chair and did a little bit of colouring with Daddy. Being in the chair clearly tired her out and she spent most of the time out of bed dozing. It also did wonders for her chest though – her coughing was so much better and she didn’t need any more nasal suction to help her bring up those chest secretions.

Because she was doing so well with her chest (and PICU was becoming very busy) the team decided that she could transfer up to high care on Ocean Ward in the evening. She had her arterial line and her pacing wires removed before transfer. We’re gradually reducing the number of tubes and wires surrounding her! The skin around where her central line was looks very sore though (due to needing frequent dressing changes) and we now have some special dressings for this to help with healing.

It was lovely to be back on Ocean Ward. Five days is a very short PICU stay for Jessica - we've previously been there for at least ten days! Jessica was the only patient on high care overnight so she's still getting one-to-one care at present.

We’ve not heard any more with regards to the query over chylothorax and for now Jessica is on a normal diet (treatment for chylothorax involves being put on a very low-fat diet). She’s managing to eat very small amounts and is also having feeds via her NG tube.


Jessica is on heparin at the moment to help thin her blood and will stay on this until her chest drains are removed. Once these are removed, she will be started on warfarin. We’re a little nervous about getting to grips with this but as with previous changes after surgery, I am sure it will become our normal very quickly!


We’re gradually seeing her little personality re-emerge as she starts to feel better. She’s still very quiet and subdued but I got a little wave and Daddy got a little high-five when we swapped over in the night. It was lovely to see Jessica playing with her Playmobil figures for a few minutes this morning. Hopefully today we can manage a bit more time out of bed.