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.

Coping with another cardiac catheter

 

Despite being nil by mouth from 6am, Jessica was fairly happy throughout the morning, continuing to enjoy riding the cars up and down the ward and enjoying a trip up to the Children’s Playcentre on G level where a magician was visiting to entertain the chidren (plus there were even more fun toys to play with!) By lunchtime she was starting to get tired and tearful and kept asking for milk. Fortunately the Tweenies and Mr Tumble managed to keep her distracted until we were finally ready to go to the cath lab around 2pm. Sophie had timed her early afternoon nap beautifully and was fast asleep in Jessica's cot so we were able to leave her there and focus completely on Jessica going to cath lab. Mummy was able to cuddle Jessica and sing her to sleep in the anaesthetic room before we headed back to the ward to wait. Sophie sleeping in the cot was also good in that it meant we weren't coming back to an empty cot.

It was a couple of hours before we were able to go over to recovery and be with Jessica.  Jessica was very sleepy whilst we were in recovery but was doing well. She had two plasters on her neck as well as the two pressure dressings in her groin and collarbone from the catheter procedure as the team had attempted to go into her jugular veins which were both blocked and then had to go in via her right femoral artery and right subclavian vein.

Jessica continued to be sleepy for quite some time after returning to Ocean Ward as she recovered and Dr Hayes came to discuss the catheter results shortly after our return to the ward. Jessica's lung arteries are quite small (as they have always been although they are growing with her) but there is no discrete narrowing in the pulmonary arteries or the aorta and the areas where they had balloned last time appeared not to have narrowed again so no ballooning was needed.  The pressures in the pulmonary arteries are not particularly high which is good considering they are on the small side. It is likely that Jessica will need to have another cardiac catheter or MRI before the team consider her Fontan procedure (the next big op) to look again at her pulmonary arteries as they will need more time to grow. The smaller arteries may mean that her Fontan may be put off as long as possible as her lung arteries will need to be bigger to improve her chances of a successful Fontan completion.

Jessica has been doing well since the procedure and has not needed any extra oxygen since leaving recovery. Her sats have been around 75-80 and whilst she has been subdued, she does not seem uncomfortable or unhappy. She has added another certificate for being a brave girl to her collection and hopefully we will all be going home tomorrow.

Cardiac catheter date

We now have a date for Jessica’s cardiac catheter  investigation – this has been arranged for 21st January so we will be going back into Ocean Ward on 20th January to prepare for this.  It has been well over a year since Jessica’s last cardiac catheter and now we have a date, we are feeling a little anxious about going back into hospital for this, particularly as Jessica is older and more aware of what is happening and probably will not remember having been on the ward previously.  This time also, we will be juggling the needs of two children which will probably mean that Daddy will have to stay on the ward with Jessica instead of Mummy (something I think will be more of a struggle for Mummy than Jessica to be honest!)  Hopefully all will go well and the results will be encouraging – we will keep you updated.

Ballooning blood vessels

We are back on Ocean Ward again – Jessica has had her cardiac catheter procedure and all has gone well.  All the nurses on the ward have commented on how much Jessica has grown since we were last here (five months ago – what a lovely long time we have had at home between hospital stays!) and how well Jessica looks.  She has been such a brave girl throughout the whole thing – other than being a bit unhappy about having bloods taken yesterday (not a fun process in spite of the magic cream) and feeling quite sorry for herself after coming out of theatre today (not too surprising!) she has mostly been her usual happy self.  Now that she is a big girl, she even has a sticker chart which is gradually filling up due to all the different tests that she has needed to undergo.

Other than all the tests needed in preparation for today’s catheter, Jessica spent yesterday quite happily playing with toys on a floor mat near her cot and giving all the nurses and Sue, the chaplain, big smiles when they came in.  We were second on the list this morning although were a little later getting to theatre than anticipated so lots of distraction was needed to take Jessica’s mind off the fact that she was not able to have any breakfast.

The catheter was being performed by Dr Wilson (the doctor who did Jessica’s very first operation before she was born).  It was a long wait whilst Jessica was in theatre – four hours in total, mostly due to the fact that there were difficulties getting the catheter into the veins, particularly the veins in Jessica’s neck which means that she now looks a little like she has been attacked by vampires, bless her!  There was some narrowing in her pulmonary arteries and aorta which has been ballooned and this should help improve the blood flow in these areas.  Jessica was a little bit wheezy when she first came out of theatre as she has a little bit of a cold but this improved soon after she arrived back on the ward.

 

Jessica has been recovering well – within minutes of getting back to the ward, she made it clear that she was hungry and then proceeded to make up for the missed feeds by having a lovely long feed from Mummy followed by a big bottle of Infatrini!  She got another certificate for being a brave girl and has mostly spent the evening snuggling up to Mummy and Daddy as she is understandably not quite as happy as she was this morning!  She has needed a little bit of oxygen to help boost her saturation levels whilst she is recovering but hopefully by morning she will be back to just breathing air again. 

Thank you to everyone for keeping us in your thoughts and prayers – hopefully all being well, we will be able to go home again tomorrow.