A return to Ocean Ward for a cardiac catheter

We arrived back on Ocean Ward yesterday afternoon to prepare for Jessica’s cardiac catheter procedure today.  It was very busy on the ward yesterday and we weren’t sure for a while whether there was going to be a bed for us – thankfully they managed to fit us in.  Jessica was actually quite excited about going to hospital so it was a relief not to have to rearrange having prepared her for an admission.

It seems strange to be back on the ward again after two years – part of me feels like it has been such a long time since we were here last and yet in some ways it seems like was just yesterday.  It is lovely to see some familiar faces on the ward though and Jessica has been very happy to be here on the whole – there are plenty of toys to play with around the bedside and in the playroom and the Little Tikes cars are always a big hit!  

It’s also been lovely to have a few visits from friends too – with visits so far from Godmummy Katy, Helen, Nick and Vicky – thank you all for coming to see us and making our hospital stay a little more pleasant. One of the best things about being back in Southampton is the wonderful support we have here and I’m always blown away by just how kind everyone is.  Having struggled to find Jessica some front-buttoning pyjamas for our hospital stay (I only found one pair of boys pyjamas in the end), I was so touched when Helen arrived with a pretty pair of girl’s button-up pyjamas which were perfect – thank you so much. A huge thank you too to Nick and Charlie for providing somewhere for Michael and Sophie to stay while we are in hospital too.

Yesterday saw the usual pre-op bustle with various tests needing to be carried out.  The worst bits were the blood tests and cannulation attempts – Jessica has never had the easiest veins in the world and even with the magic cream, the multiple attempts required for a successful cannulation were very upsetting for her. Thankfully it all seemed to be forgotten very quickly once the cannulation was in. She needed to have IV fluids overnight as her haemoglobin levels are high (which is fairly common in children with cyanotic heart conditions) which means that she is more at risk of clotting when nil by mouth due to being dehydrated.

We managed to stay distracted this morning with visits to the playroom.  Jessica was quite excited when the trolley arrived and she got to ride in her “carriage” (as she called it) to the cath lab.  Whilst waiting, she found a Megasketcher drawing board and was quite happily drawing pictures of her dolly Kerry and a “shadow monster” whilst chatting away to the anaesthetist about what was happening in the picture which provided good distraction from everything happening.  She wasn’t too keen on the “sleepy milk” going in her arm as it felt cold but went off to sleep very quickly and fairly happily which was a relief.

There was the usual wait of a couple of hours or so while she was in the cath lab – with Sophie to distract us though, it didn’t feel nearly so long.  Once we had the call to say Jessica was back, I headed over to find a very unhappy little lady in need of her Mummy.  We had a nice snuggle together for the next hour or so, and gradually that beautiful smile started to return and Jessica started to feel much better again.

Results wise, things seem to be fairly encouraging.  Jessica’s pressures are good and her right pulmonary artery is a good size, although the left one is (and has always been) quite small.   It may be that this will grow a little more given time, but equally it may be that the increased blood flow that would result from the Fontan would help it to grow.  With regards to the next stage, the catheter indicates that the pressures are good enough for the Fontan to take place, but with things being fairly stable at present, there seems to be no urgency.  The team will discuss the results at their next team meeting and may make a suggestion for when it might take place but will also consider our thoughts on this too.  We’ll know a little more once the team meeting has taken place.

After a few hours to recover, Jessica was pretty much back to her usual happy self and keen to get back in the cars and go driving around the ward again! The site where the catheter was inserted in her groin is very bruised and the team are keeping an eye on this overnight but otherwise all seems to be well and we’re hoping to go home tomorrow.  Thank you to everyone for all of your thoughts and prayers today and we’ll keep you posted.

Five years into the journey

Five years ago today we were told that Jessica’s heart condition was so severe that surgery was unlikely to be an option.  It was, without a doubt, one of the hardest days of our life - all we could do was to pray for a miracle.  Although we didn’t grasp it at the time though, the consultant that day did give us that glimmer of hope we prayed so desperately for with his dismissive remark about in-utero surgery that ended up taking place just six weeks later. 

What a miracle it is to be five years on from that devastating day and to be able to watch Jessica running around with Sophie, doing all the things that other children of her age are able to do and lighting up our world with her sunny smile.  We thank God every day for these two wonderful daughters of ours and everything that has led us this far.  There might still be big steps to come but for now we will focus on the joy, the hope and the miracles that have got us this far and concentrate on making happy memories.

A few weeks ago, Jessica started Girls’ Brigade and on Sunday took part in her first parade service at church.  Seeing her there in her Girls’ Brigade uniform with the other children was such a proud moment for both of us – especially as Michael was part of the Boys’ Brigade at our church when he was younger.  Jessica looked very tiny walking in holding one of the bigger girl’s hands but she sat happily with the others throughout the service and went out to parade with the others after the service finished.  It is lovely to see how much she has enjoyed going to Girls’ Brigade so far – every Friday she tells me that she is “so ‘cited” about going.

We had a lovely weekend celebrating Mummy’s and Auntie Fizz’s birthday last weekend and Jessica enjoyed spending time with her cousins and we have also enjoyed lots of days out and about.  It is wonderful to see the world through Jessica’s eyes – she has such a fabulous imagination and it always adds an extra touch of magic to our days out.

We’re trying not to think too much about next month’s cardiac catheter procedure just yet.  Last week’s visit from the community nurse was very encouraging though as Jessica’s sats were around 85 which is the best they’ve been for quite some time.  Fingers crossed they stay up there for a while!

Significant decisions

The last couple of days have been quite significant with regards to planning Jessica’s future.  Yesterday we received confirmation that Jessica has been given a place at our local village infant school (our first choice) to start in September.  Today we received a call from Southampton to book us in for Jessica’s cardiac catheter procedure – the first step on the road to her Fontan procedure.  This is now booked in for Tuesday 7th June.  We will be going in the day before for all the various tests that need to take place before the cardiac catheter itself and will possibly need to stay overnight on the day of the catheter itself.

We don’t yet know how likely it is that Jessica’s Fontan will be planned before she starts school.  I suspect that this will depend on the findings from the cardiac catheter procedure and we will know more once that has taken place.  We have received a letter from Jessica’s consultant with more details about the findings from her last appointment which has confirmed that Jessica’s cardiac state is stable and whilst she has had episodes of low sats, these were mostly due to having a chest infection.  She’s certainly seemed well in herself over the last few weeks and we’ve had no concerns.

Last week saw the fourth anniversary of Jessica’s Glenn procedure – another reminder of just how far she has come.  Those four years seem to have gone by in the blink of an eye! With a little over four months left before Jessica is due to start school, we’re hoping the time won’t speed by too quickly though! In the meantime, we’ll enjoy getting out and about in the (hopefully) nice weather and try to make the most of not yet being restricted by school timetables!