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!

Post-Fontan recovery: Day 9 (Ocean Ward)

Jessica had another good day yesterday. Her oxygen requirements are gradually being reduced each day and she seems to be coping well with this. She’s managing to go from bed to chair more easily with help and has been enjoying being able to sit out and play with her toys (and watch CBeebies on the iPad!) She’s still coughing a lot but her chest sounds are better than they were a few days ago. We had a chat over FaceTime with Godmummy Gillian in the morning and another visit from Godmummy Katy in the afternoon which was lovely. Jessica also enjoyed getting to chat to Sophie via FaceTime. She misses her sister but both the girls are coping well with having to be apart for the time being, which I am thankful for.

Last night was quite a restless night. Jessica was quite irritable and itchy, and struggled to find a good sleeping position. Her morphine was stopped yesterday and it may be that the restlessness and irritability are as a result of morphine withdrawal. She did have some short periods of being asleep and settled after I took over and has seemed fairly happy this morning so fingers crossed that coming off the morphine isn’t causing too many problems.



The biggest difference I’ve noticed this morning is with Jessica’s movement. She’s moving freely around her bed now, sitting up straight in the middle of the bed and being able to move herself back up the bed into a comfortable sitting position each time she starts sliding down the bed a bit. A couple of days ago, we were constantly having to scoop her up and move her back up the bed; now she is mostly doing it by herself. She’s also much less wobbly on her feet when moving from bed to chair and back again. We’ve still got some way to go but each day brings another little improvement which is wonderful to see.

Post-Fontan recovery: Day 8 (Ocean Ward)

Jessica had a good morning yesterday with some more time spent out in the chair doing some painting, playing with kinetic sand and doing some puzzles. She’s not been eating very much over the last few days and it’s been an effort to encourage her to eat very small amounts. Strawberries seem to be the one thing Jessica will eat at the moment so we’ve stocked up on these! She is having some feed overnight through her NG tube but because she’s not managing to eat much in the day, this has been changed to a higher calorie feed to help give her a bit more energy, which will hopefully also help bring her appetite back a little.

She ended up falling asleep in the chair after lunchtime. She was quite sick when she woke up though and spent the rest of the afternoon back in bed and sleeping most of the time. She was given some anti-sickness meds to help her feel better and Godmummy Katy popped in for a visit which made her smile.


Last night was a nice settled one. Jessica slept for most of the night although was sick again shortly after I took over from Michael at 4.30am. Since then she has seemed much better though and has been enjoying playing with Lego and watching Hey Duggee on the iPad. The doctors were happy with her progress when they reviewed her this morning. There are still significant amounts coming out of her remaining chest drain so this will remain in situ for at least a couple more days. It looks like it will be a little while yet before she is ready to move out of high care. In the meantime though, the plan is to try to reduce her oxygen requirement and continue making small, but steady, steps towards getting well again.

Post-Fontan recovery: Day 7 (Ocean Ward)

Jessica had another good day yesterday. She spent several hours out of bed sitting in the chair and had lots of fun doing some painting and sticking with the play worker and playing with playdough. She looked quite tired out in the chair after a couple of hours but was quite insistent on staying there for as long as possible!

One of her chest drains is still draining a reasonable amount of fluid but the other one was only draining very small amounts and was removed yesterday. Jessica was given some midazolam just before her chest drain was taken out to help sedate her a little and make her more comfortable for this. She slept for most of the day after that which made up for a fairly restless night the night before! There doesn’t appear to be any chyle draining from the chest drains so hopefully we have managed to avoid chylothorax this time around!



Jessica’s weight this morning has decreased a little so the diuretics are working well. Her breathing seems much more comfortable than it was a couple of days ago although she is still a bit breathless. The plan for today is to have more time out in the chair playing and doing arts and crafts and to try to reduce her oxygen requirements a little.

Post-Fontan recovery: Day 6 (Ocean Ward)

It has been lovely to see more of Jessica’s happy personality re-emerge over the last 24 hours. Yesterday morning, she was making the nurses dance to the music on one of her toys and it was wonderful to see her smiling as she watched them. She’s taking more of an interest in her toys again and has been playing with her hospital Playmobil figures and her Frozen mini figures. She also enjoyed getting to chat to Sophie and Nanny via FaceTime. Sophie is having a lovely time at the moment but we do miss having her with us. Hopefully it won't be too much longer before we can be together again.

Jessica is starting to eat and drink a little more now. She managed to get out of bed with a little help and took a couple of steps to go and sit on the scales and be weighed. She’s had a significant weight gain since her op and the team were a little concerned that she might have fluid on the left side of her chest, as she doesn’t have a drain in this side, and is also still very breathless. Thankfully the ultrasound didn’t show any fluid but her diuretics have been increased slightly to help reduce any fluid retention. The two chest drains on the right side are still draining significant amounts so it will be a little while yet before they are ready to come out.

Yesterday was quite a busy day for Jessica with dressing changes, having cannulas removed and replaced and having an echo done.She had so many things done that she’s filled up her first sticker chart and the second one is already half-full! By the time there was an opportunity for her to have some time out of bed and in the chair, she was exhausted and just wanted to go to sleep. Today should hopefully be a little quieter though so we should be able to get her out of bed for a while in the chair and perhaps do some colouring and arts and crafts.



We still have quite a way to go on the recovery front, but we are definitely taking little steps forward every day. Jessica has constantly amazed us with how well she is coping – she takes so much of what happens in her stride and we are so very proud of her.

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.

Post-Fontan recovery: Day 4 (PICU)

Jessica has continued to have more chest physio to help try and clear her chest. She has been blowing bubbles to try and help clear her lungs. The first batch of bubbles had washing up liquid and paint to help making the bubble blowing more fun. This worked quite well until she ended up getting a mouthful by forgetting to blow (in front of the consultant!) and so the bubble liquid has been replaced with blackcurrant squash instead. It still works well with getting her to blow bubbles in it but isn’t quite so much fun with trying to see how many bubbles she can make!

On ultrasound, the right side of her diaphragm isn’t working as well as her left and is a little high. At present, the team are monitoring this. Mr Viola, the surgeon, came to see Jessica this morning and is fairly happy with her progress although her lungs are a cause for concern at present. It may be that she’ll need a procedure on her diaphragm to help give her right lung a bit more space although for now, the team will just keep an eye on this.


Jessica had her chest dressing removed yesterday and her new zip looks very neat. She still has the chest drains in situ and the fluid from these is being monitored a little more closely to check for chyle. She had a chylothorax after both her previous surgeries and while we’re hoping that we’ve managed to avoid it this time around, there is a risk that it could happen again.

We managed to have our first post-surgery cuddle with Jessica yesterday evening while her bedsheets were being changed. It was a brief cuddle as she is quite uncomfortable with all the drains and tubes in her, but it was lovely to have a cuddle again.

Jessica is much more awake now. She is very tired but is coping well with everything. We are so proud of how brave she is being, particularly when she is having chest physio and suction which is very unpleasant for her. She knows that it is being done to help make her feel better and while it upsets her to have it done, she accepts that she needs it and doesn’t resist too much. She is being very quiet and mostly communicates with nods and shakes of her head at the moment; occasionally asking for water or a DVD. We do get the odd little half-smile and I had a “love you too” this morning which was lovely.



The plan at the moment is for Jessica to remain on PICU for a while longer. Her sats have generally been good and she is doing well on the whole. Once her chest clears we will hopefully be able to go back up to Ocean Ward.

Post-Fontan recovery: Day 3 (PICU)

Jessica is now off the ventilator and breathing well by herself with some extra oxygen to help keep her sats up. She was quite unimpressed with everything when she first woke up – especially the oxygen prongs up her nose and not being able to drink very much for a while. Her throat was quite sore from the ventilator and it took a little while before her voice started to come back. She was a bit spaced out from the morphine and told us that she was “better now” and wanted “to go downstairs!”


She became more settled as the day went on though and coped well with only being allowed small sips of water. She did manage to eat a yogurt and a couple of pieces of melon which hopefully also helped to quench her thirst a little.


We had a bit of a bumpy start to the night when the shift changed. Jessica had a lot of secretions on her chest that had built up a bit during the day. We had quite a few bouts of her sats dropping quite low and her needing chest physio and suction to help her cough up the secretions which wasn’t very pleasant for her. Thankfully, once she’d had a really good cough, her sats started to settle again and stay more stable. She’s also been on a nebuliser overnight to help with those chest secretions.

We saw in the New Year on PICU and Jessica woke up very briefly just before midnight and stayed awake to see in the new year with us. To be seeing in 2018 with our brave little superstar is just the best feeling ever. We did miss having our little Sophie with us though but she seems to be having a lovely time with Nanny at the moment which is good. Jessica did tell us at one point last night that she wanted Sophie – hopefully we will all be together again very soon. Thank you so much to lovely godmummy Katy who dropped off some snacks and a little something for Jessica to help us celebrate the New Year.


Michael and I took turns overnight to stay with Jessica now that she is more awake. This morning, she is looking much more settled and even gave me a little half-smile when I arrived back on PICU after some much-needed sleep. The right side of her chest sounds a little quiet today so she is going to have a chest X-ray this morning to see what might be causing that. She’s continuing to head in the right direction though.


Happy New Year to you all!