Being pleased with Jessica's progress

After our last clinic appointment, Dr Archer was going to meet with the rest of the team to discuss the plan for when Jessica’s Fontan was likely to take place – whether they would aim for later this year or try to hold off until spring 2016 (or later).  This morning, we got a letter through from Dr Archer which told us that “everyone is very pleased with her progress” and “there doesn’t seem to be any reason to recommend further investigations at this time and we would all be very happy if there was no need to look further into completion of the cavopulmonary circuit until 2016 but of course we will keep an eye on her progress.”  It is such a relief to know that the team are happy with Jessica’s heart function at present and that hopefully there will be no surgery planned for this year unless Jessica shows signs of needing it.

During the winter, she often does look more blue due to the colder weather and you can see from the photo below which I took for CHD Awareness Week the colour of Jessica’s hands compared to mine.  It is reassuring to have the regular checks from the community nurse which show that Jessica’s sats are still staying in the low 80s and that she is continuing to follow the 25^th centile line with regards to weight gain.

We noticed at the end of Jessica’s first half-term at preschool that she was getting very tired in the afternoons.  Whilst we know that being more tired as a result of being a preschool is very normal for heart-healthy children, we weren’t quite so sure whether Jessica’s tiredness was likely to be a cause for concern but were reassured by the cardiac liaison nurse that if she is not looking more blue and there aren’t any other concerns, it is likely to be just normal preschool tiredness.  Having a week off at half-term and spending time with her cousins seemed to help perk her back up again!

We have had a lovely month catching up with family and celebrating Grandma’s birthday, enjoying a brief moment out in the snow (before it all melted away) and having fun doing crafts at home and going out to the park.  Daddy has been away working on an event for the last couple of weeks though and we are all very much looking forward to him being back home again at the weekend.