Post-Fontan recovery: Day 2 (PICU)

Jessica had a fairly stable day yesterday. She had regular bouts of chest physio and suction to help clear her chest and the secretions have lessened throughout the day and overnight. She came off the pacing wires during the morning and her heart rhythm has been good. She still has the pacing wires in situ for now but hopefully they won’t be needed again.


We’ve had quite frequent wakeful periods and Jessica has definitely been a little more aware of what is going on. She has tried to talk but can only mouth words while she has the ventilator in and has responded to what we’ve been saying to her with nods and shakes of her head. The wakeful periods have been very brief and she responds quickly to being given a little more sedative and muscle relaxant to get her settled again.

The plan for today is to try to extubate her and get her breathing on her own and woken up. Hopefully she will respond well to this.

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.

Completing the Fontan

Jessica went down to theatre at about 9am this morning. She was an absolute superstar – smiling and chatting away to everyone right up to the point that she went off to sleep. We then had a long wait to endure while she was in theatre although we did receive occasional brief updates throughout the day.

Mr Viola, the surgeon, came up to the ward at about 4.30pm. Jessica was fine. Her surgery had been taken a bit longer than expected. They had done an internal Fontan procedure (inserting a tube into the heart itself) rather than an external one (making a conduit outside the heart) because there were veins in the way. He had also needed to do some work on Jessica’s left pulmonary artery. Because the surgery was a little more complex than anticipated and Jessica needed to be on bypass for quite a while, her lungs may struggle a bit at first with adjusting to her new circulation. However, he was happy with the blood flow through the Fontan and how Jessica’s heart was coping with it.


We finally got to see Jessica on PICU around 7.30pm. The consultant on PICU tonight has looked after Jessica several times in the past and it was reassuring for us to see a very familiar face! Tonight will be all about trying to get all her vital readings where the team would like them to be and keep them there. We are very aware of what a rollercoaster ride this can be!


Thank you all so much for all your prayers, love and support. We are so thankful that Jessica has come through her Fontan surgery and will be praying that her recovery will be considerably smoother than it has been with her past surgeries!

Preparing for the Fontan again

We’re back on Ocean Ward again ready for Jessica to hopefully have her Fontan procedure tomorrow. Today has been full of the usual rounds of pre-op tests which Jessica has once again taken in her stride. She is very chilled out about having her operation tomorrow and hopefully it will be third time lucky for her.

As hard as it has been to have to build ourselves up to this once more, it was wonderful to be able to spend Christmas at home before coming back in. Jessica and Sophie had a lovely Christmas and enjoyed spending Christmas Day at Grandma and Grandad’s house before having a nice quiet day at home yesterday getting to play with all the toys that Father Christmas (and everyone else!) brought them.

Today has felt like a big step out of that lovely Christmas bubble as we prepare to step once again on the hospital rollercoaster.  There have been some fun moments in our day though. Jessica had a visit from two very zany doctors – Doctor Easy-Peasy and Doctor Glow, the Giggle Doctors – which turned into an impromptu disco in her room. It was also lovely to see Nanny, Auntie Fizz, Tony, Tyler and Auntie Maxine who all came to visit (and take Sophie for her sleepover at Nanny’s). 

Jessica has been very brave today with all the pre-op tests. She knows what to expect by now and just gets on with it! To see how well Jessica copes with it all has helped us to stay strong for her. It was hard once again to have Sophie leave for her sleepover though. Hopefully it won’t be too long before our little girls can be together again.

Jessica is first on the list for tomorrow and, all being well, should go down to theatre around 8.45ish. As you can imagine, we are quite anxious about this next step although we are holding on to our faith that God has got this and that we are never alone in this journey. We know too that we are surrounded by so much love and support from our friends and family and we are thankful for that. Please do hold us in your prayers tomorrow as Jessica takes this next big step. We will update when we can.

Another new date for the Fontan

We now have a new date for Jessica’s Fontan and will be going into hospital on 27th December ready for her operation on 28th December. Hopefully it will be third time lucky for us! It also means that we will be able to enjoy Christmas together before we have to get back on the hospital rollercoaster.

Jessica is now back at school and enjoying being with her friends again. We got to see her in her class assembly this morning which was lovely. 

Hope that you all have a lovely Christmas and we will update again when we are back on Ocean Ward.

Back in limbo-land

Jessica’s Fontan has had to be postponed once again. We were told this morning that her surgeon, Mr Viola, is unwell and that PICU is also full at the moment which means that her surgery needs to be rescheduled once again.  As yet, we don’t know what the new date will be. In the meantime, it’s back home again while we wait, and back to making the most of normality.

Jessica is very disappointed about her surgery being postponed yet again. She had a good night and had started IV fluids a few hours before we found out about the surgery being postponed. She soon discovered that she could ride her IV pole like a scooter and that the most fun way of getting around the ward was to stand on it and let Mummy push her around. I was relieved that she’d only had her breakfast a couple of hours before and hadn’t had a long period of being nil by mouth before finding out, as had happened when her Glenn was postponed.

It is hard to have to go home and go through all the build-up yet again but it can’t be helped. We will continue to hold on to our faith that the surgery will happen at the right time for Jessica. We also found out after being told that Jessica’s surgery had to be cancelled that her bloods showed that her CRP levels were a little raised. This suggests that she might be brewing an infection. She and Sophie have both had coughs and colds recently (which they seem to be passing back and forth!) Hopefully having a little longer to wait will help her get rid of the winter bugs too.

We popped in to visit Godmummy Katy after leaving the hospital which helped to cheer Jessica up, before heading to Nanny's to pick up Sophie after her sleepover. It is lovely to have our family reunited again even though we know we have it all to come once again!

We will update again when we have been given a new date. Thank you again for keeping us in your thoughts and prayers so far. It helps so much to know that our little girl is surrounded by so much love.

Preparing for the Fontan

We’re back on Ocean Ward ready for Jessica’s Fontan tomorrow. It’s been a busy day full of the usual pre-op tests and getting ready for the surgery. Jessica has coped well with it all and has been enjoying collecting stickers for her sticker chart to show what a brave girl she is being! She and Sophie have also enjoyed playing together in the playroom.

 Nanny, Auntie Fizz, Ebony and Erin and Godmummy Katy have all been in to visit Jessica today. Sophie has now gone for her sleepover at Nanny’s. Jessica was absolutely adorable when it was time for Sophie to go; giving her sister big hugs and telling her to “make sure you tell me all about your sleepover when you come back.” This was the hardest point of the day for us but we are sure that Sophie will have a lovely time with Nanny while we focus on being with Jessica.

Jessica is second on the list for tomorrow. There is an urgent procedure due to take place first and we are not expecting her to go to theatre until around 1pm. We have also been warned that there is a possibility that Jessica’s surgery may have to be postponed if the first procedure takes longer than expected. Hopefully all will go well though and she will be able to have her Fontan tomorrow as planned.

Thank you to everyone for all your thoughts and prayers so far. We will let you know how we get on tomorrow.