A tale of two check-ups

Jessica had her cardiac check-up at Oxford this morning and her heart function continues to look good and she is gaining weight well – measuring in at 14kg exactly and 89.9cm (so should reach that magic 0.9m mark before Legoland opens in the spring so she can go on a few more of the rides!)  Her sats were 77 which is slightly lower than they tend to measure at home (usually in the low 80s when our community nurse visits) but according to Dr Archer this is quite normal and is probably because home is a little bit warmer than the clinic room.

We are starting to think ahead now towards Jessica’s next stage surgery, the Fontan procedure and it is a little scary that this procedure is now starting to loom ever nearer.  This timing for this will be discussed by the team across Southampton and Oxford before our next appointment sometime towards the end of May.  Ideally, the Fontan procedure would not take place during the winter (when PICU tends to be busier due to winter illnesses) and so the debate now is whether Jessica’s Fontan will happen later this year or whether the team feels she will be able to wait until Spring 2016 (or perhaps beyond).  Whatever the decision is, she will need to have another cardiac catheter procedure before this in order to check that her pulmonary arteries are growing well enough for her to cope with the Fontan and some ballooning may be necessary to enlarge them.

We had an unexpected second trip to hospital this afternoon as whilst travelling back on the motorway from our appointment in Oxford, our car was hit from behind whilst (thankfully) in a slow-moving traffic jam.  None of us appeared to be particularly hurt, although of course both Jessica and Sophie were upset and a bit shook up by it.  We felt though that it would be best to get Jessica checked over just to make sure she was okay.  We have open-access to the children’s ward at our local hospital anyway, and they advised us to take Jessica to A&E.  After having an ECG done and being checked over, the doctor was happy that all was fine and we could go home. 

Other than hospital visits, all has been well.  Jessica is loving her preschool – she frequently tells us ‘I love my preschool’ and chatters constantly about the friends she has made there.  It is wonderful to see how well she has adapted to this change in her life.  She also had her preschool booster jabs last week and was a very brave girl – didn’t even make a little bit of fuss although demanded a sticker as soon as the nurse had finished!  That’s what happens when you get used to lots of hospital appointments and getting stickers for being a brave girl…! 

The issues that we had with getting one of Jessica’s medications have now thankfully been resolved and our pharmacy has been able to obtain it again.  Hopefully we won’t have any more issues with this. 

Jessica starts preschool

Jessica took another significant step on her journey today, taking her first steps into independence as she started preschool for the very first time.  She was very excited about going and a passer-by seeing her waiting at the gate would have thought she’d been going to preschool for weeks – she was waving at all the other children and saying hello even though she didn’t know any of them! Once inside, she barely waited long enough for Mummy to take her coat and boots off and give her a kiss goodbye before she was off to play with the toys.

 The morning seemed quite long and quiet without Jessica’s chatter, singing and impulsive hugs but Sophie enjoyed having some one-to-one time with Mummy for a change.  At pickup time, Louise was a little disappointed that nothing was said about how Jessica had got on although Jessica seemed happy and said she’d enjoyed herself.  Louise called the preschool later in the afternoon to find out more about how Jessica had got on and found out that Jessica’s key worker was absent today due to a family emergency and a miscommunication amongst the preschool staff meant that everyone thought that someone else had given the update.  Jessica had enjoyed playing with Minnie Mouse and Daisy Duck dress-up figures, had had some time playing outside and had been very chatty and sociable.  She’d asked for Mummy once whilst having her nappy changed, telling the preschool staff that she wanted to cuddle Mummy but otherwise had been fine with being left.

It is lovely to see how sociable and friendly Jessica is and how well she has coped with this little milestone.  It was the first time that she has been left with people we don’t know since her stays in hospital and it certainly felt like a big step from our perspective.

In other news, we are still having big issues with trying to obtain one of Jessica’s medications as all the pharmacies we have contacted in the local area are out of stock with no idea of when it will be back in stock again.  We should just about have enough to last until the next cardiac check-up at the end of this month and the cardiac nurses are aware so hopefully we will be able to find a solution to this problem.