Seven weeks on: post-Fontan check-up

Jessica has been recovering well at home over the last few weeks. Her energy levels are now back up to where they were before her surgery and hopefully will continue to improve. She has enjoyed having “school at home” with Mummy since coming home and it has been lovely to have that one-to-one time with her.

We were back in Southampton today for Jessica’s second post-Fontan check-up. She coped well with the echo and ECG and surprised herself with how well she coped with all the stickers being taken off her chest afterwards too! She’s doing quite well – her heart function looked good on the echo and she can now come off the diuretics which leaves her with just aspirin and Vitamin D on the medications front.



Her sats are still a little on the low side though. Today they were around 78 which is about the same as they were pre-Fontan. Hopefully they will start to improve over time but if not, Jessica may need to have an MRI to have a closer look at her heart to see if there is anything else causing the low sats, such as extra blood vessels bypassing the Fontan circulation. In the meantime, she will continue to have monthly sats checks with the community nurse as she did before her surgery.

Our other slight concern has been with Jessica’s voice. She’s quieter than she was before the surgery and still sounds hoarse at times, especially when she tries to raise her voice or shout. We’ve been reassured that this should gradually improve but if not, Jessica will be referred to an ENT specialist for further investigation.



Sats and voice aside, she seems to be doing well though. Her appetite has noticeably improved over the last couple of weeks and it was nice to see a weight gain in clinic today! She has also been given the green light to go back to school again tomorrow – starting back on half-days this week and then hopefully going back to full days next week if she copes well.



In other news, as many of you already know, Jessica and Sophie are very excited at the prospect of having a new sibling who is due in August. They have known about baby “Peanut” since Christmas and other than Jessica telling all the doctors and nurses about Peanut while she was in hospital, have done very well at keeping it a surprise. It’s lovely though to finally have our news out in the open and be able to share it now. Jessica has already asked whether Peanut will have a special heart like her. We should be having some extra heart scans over the coming week to find out the answer to that one.

As far as Jessica’s special heart goes, we’ll be back in Southampton again in four months’ time for her next check-up. Hopefully there’ll be some improvement in her sats levels between now and then. In the meantime though, we’ll make the most of being able to enjoy normality once again.

Post-Fontan recovery: Home on day 16!

We were very pleased last week when we thought that Jessica would be coming home this week. We didn’t expect that we would get to go home on Saturday though! With Jessica’s NG tube being removed on Saturday morning along with her cannula and drain dressings, there was really no reason for her to stay in hospital any longer. Saturday afternoon saw us packing up and heading home for Jessica to start her recovery at home!

While we were absolutely delighted to be coming home, we kept a little quiet about it on social media on Saturday. We wanted to be able to surprise our church family by turning up all together. It was especially lovely because of it being a church parade service (where the Girls’ and Boys’ Brigade members join in with the service) so both our girls were there in their uniforms.

We had a little worry last night as Jessica was coughing a lot and sounded a bit chesty. Thankfully a check-up with the GP this morning shows that her chest is clear. Hopefully it is just a little bit of a cold and won't cause too many problems with her recovery.


It is lovely to be home again. Jessica will be off school for the next few weeks as she recovers at home, but Sophie went back to preschool today and enjoyed seeing her friends. We have a follow-up appointment in Southampton for Jessica on Friday to check how she is recovering and will be taking things easy this week as we get used to being home together. A huge thank you to everyone for your love, support and prayers. After previously having surgical stays of at least four weeks, it is amazing to be home at a little over two weeks following the surgery.

Post-Fontan recovery: Days 14 and 15 (Ocean Ward)

Jessica has had another good couple of days. Getting around the ward has been much easier since the chest drain came out as she’s only had an IV pole to take long with her. She quite enjoyed standing on the pole and being pushed around – a much quicker and easier way to get about! She has been able to come into the ward kitchen with Mummy to have breakfast and her appetite has improved so much that the dietitian has been happy to stop Jessica’s overnight feeds through the NG tube. Hopefully this will be able to come out at some point today.

After being without Sophie for more than two weeks, it was wonderful to finally be reunited again on Thursday evening. The girls were so happy to see each other again and it was so lovely to have Sophie with us once more. She has had such a lovely time at Nanny’s and has been so good throughout her visit. She didn’t cry once during her time there but I think the emotions from being separated from us for so long hit her later that evening when it was time to leave Mummy and Jessica on the ward and go and stay in the Ronald McDonald House with Daddy. Thankfully, she was much happier in the morning though and was in no hurry to leave the toys in the playroom at “the M house” and come up to the ward to see Mummy and Jessica!

Jessica loved seeing Nanny again on Thursday evening when she came up with Sophie, and enjoyed visits from Grandma, Grandad and Godmummy Katy yesterday. It is lovely to see her being able to move about more easily and sitting up and chatting away to everyone. We had the first mention of the “H” word on Thursday’s ward round with the doctors considering it for the beginning of next week, all being well. With our previous surgical stays having been at least four weeks, it looks like this time around we will hopefully be getting home a little sooner!

Post-Fontan recovery: Day 13 (Ocean Ward)

It has been amazing to see the changes with Jessica over the last couple of days. She’s gone from being restricted to her bed and chair and having lots of tubes and wires in high care to being able to move about the ward with most of the tubes and wires removed. Yesterday saw another big reduction in the tubes and wires. Jessica came off the oxygen altogether in the morning and had the remaining chest drain removed in the afternoon. We’re just left with one cannula for her heparin and an NG tube.



We were told last week that Jessica would go on warfarin after her chest drain was removed and the heparin stopped. The decision to put her on warfarin was due to her having sluggish flow in her inferior vena cava (the main blood vessel going from the body to the heart). However, the echo she had a couple of days ago shows improved blood flow and so the team have decided to go for aspirin instead. This will be much easier to manage at home than warfarin! The heparin needs to continue until she’s had three doses of aspirin and then that cannula should be able to come out.



We had hoped that her remaining cannula would hold out a couple more days just until the heparin finished. Unfortunately it stopped working last night and had to be replaced. It had lasted well though given it was put in while we were still on PICU. Fingers crossed the new one keeps working and we won’t need any more cannulas put in now.

Jessica has been enjoying being able to get around the ward and visit the playroom again. She spent most of yesterday afternoon sleeping as she was sedated for the chest drain removal. She wasn’t very impressed that she slept through dinner time and missed her fish fingers and chips though! Nice to see her showing an interest in food again. We did have some food in the fridge for her, so she didn’t go hungry!



We are looking forward to Sophie coming to the hospital today. It has been more than two weeks since our girls were last together. It will be lovely to have our little family back together again.

Post-Fontan recovery: Day 12 (Ocean Ward)

Jessica had a really good day yesterday. She had a lovely morning and enjoyed making Frozen characters out of Lego during her school session in the morning and having a visit from Godmummy Katy just before lunch. Her appetite is starting to improve and she is beginning to show an interest in food again.

She wasn’t too keen on having her nasal prongs changed over so she could move off the opti-flow oxygen and on to normal oxygen. Her ECG wires have all been removed as she no longer needs continuous ECG monitoring. Having the tubes and wires reduced a little more meant that Jessica was able to get up and go for her first walk around the ward pushing her drain, heparin and oxygen around with her in a trolley. She made a beeline for the playroom. It made us laugh that the one toy she wanted to play with there was another trolley!

We were quite impressed by how speedy Jessica was getting around the ward. I almost had to run to keep up with her! A trip to the playroom and back was quite enough for a first walk though and she was quite happy to get back into her bed when we returned to high care.

Being able to get up and about was a big step in itself but the big steps forward didn’t stop there. Later that evening, Jessica was moved out of high care and into Dolphin bay. Another step closer to getting home again. It meant that Mummy was able to sleep next to her bed (no more doing shifts with Daddy so that one of us can sit Jessica overnight). It also means that we will be able to have Sophie with us again soon, as she can stay with Daddy in the Ronald McDonald house while Mummy stays on the ward with Jessica. Hopefully she can come up to the hospital tomorrow. We’re looking forward to seeing our baby girl again after two weeks of being apart.

Post-Fontan recovery: Day 11 (Ocean Ward)

It was back to school for Jessica yesterday! We had a visit from the teacher at the hospital school in the morning who then did a reading session with Jessica in the afternoon. She’ll be dual-registered at the hospital school (along with her normal school) while she is in hospital which will count as school attendance during this time. There is a classroom up on G level which children can go to if they able; otherwise the teachers can come to the bedside and do a couple of teaching sessions each day.

Jessica had fun in the morning doing some beading with the play worker and also got to meet Archie, the Pets as Therapy dog who came for a visit. She was thrilled to receive a couple of parcels in the post in the morning with some sweets, colouring/activity books and hand-made cards from everyone in her Girls’ Brigade company.

Recovery-wise, Jessica continues to make gentle progress. She manage to eat a little more yesterday although we weren’t very impressed when the hospital catering company failed to provide any supper for her ward. It took three phone calls from the nurses before they finally sent someone up with snacks and sandwiches at 7.30pm. Hopefully today’s meals will arrive as normal!


At the moment, the focus is on continuing to wean Jessica’s oxygen down and to keep encouraging her to eat and drink a little more.

Post-Fontan recovery: Day 10 (Ocean Ward)

Jessica is continuing to make small improvements every day. Her oxygen requirement is getting lower and we’re hoping that she’ll be able to move off the Optiflow and on to normal oxygen tomorrow. The amount of fluid draining from the remaining chest drain is getting less although it’s still too much for the drain to come out just yet. She had a much more settled night last night and doesn’t appear to be having any more side effects from the morphine being stopped.

Yesterday was mostly about trying to encourage Jessica to eat a little more. She’s now taking more of her medicines orally (instead of down her NG tube) and is managing to eat very small amounts (mostly strawberries and grapes!) We had a lovely visit from Grandma and Grandad yesterday afternoon and Jessica enjoyed seeing them. Grandma read her a story and Grandad played with Lego and playdough with her. I’m not sure who was having more fun with the playdough though – Jessica or Grandad!