Home again

We’re now all back home again after being discharged from Ocean Ward earlier today.  Jessica had a reasonably good night and by morning was getting back to her usual self, although was still a little bit on the subdued side.  She didn’t enjoy having her dressings removed but being able to ride the cars up and down the ward again soon helped to cheer her up again whilst we were waiting for the discharge paperwork so we could head home.

Thank you to everyone for all your support and thoughts and prayers over the last few days.  It feels good to be back home again!

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.

Pre-cath preparations

We are back on Ocean Ward ready for Jessica's cardiac catheter investigation tomorrow. Jessica is third on the list so will probably be going to the cath lab sometime after 12 tomorrow. There was a little concern earlier that the cardiac catheter might have to be postponed as Jessica has had a bit of a cough recently (it has been off and on throughout the winter so far) but as she has had no fever, Dr Hayes, who will be one of the doctors performing the procedure tomorrow, has decided to go ahead with the catheter.

It has been a busy day up on the ward with the usual battery of tests being performed ahead of tomorrow's procedure. Jessica has had an echo, ECG, blood taken (which she was very upset by, poor little love), been weighed and measured (latest weight 11.6kg (25lb 8oz) height 82cm) and had sats, heart rate and blood pressure checked (sats are about 79).  In between she has enjoyed riding up and down the ward in the Little Tikes cars and had visits from Donna and Lily Jones (from Charlie Jones Foundation - lovely to finally meet them both after lots of online chats), Sue the lovely hospital chaplain, our friend Gavin and godmummy Katy.

Tomorrow's procedure is primarily to view Jessica's lung arteries and aortic arch, measure pressures and check that they are growing well. It may be that some ballooning will be needed if there is narrowing.

Daddy will be staying overnight with Jessica and Mummy and Sophie will be staying with our friends Nick and Charlie as the family accommodation near the hospital is full (thank you Nick and Charlie!). Jessica took a little while to settle at bedtime as was quite overtired and tearful after all the activity of the day but is now settled after lots of cuddles.  We will update again tomorrow and let you know how things go.

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.

Happy New Year

 

Happy New Year to you all!  Jessica managed to see in her first New Year at home (albeit asleep in her cot) after having been in hospital for the last couple of years.  We have had a lovely Christmas as a family of four, spending Christmas Day with Grandma and Grandad and then going to visit Nanny and other family members between Christmas and New Year.  Jessica has had a lovely time playing with her cousins.  She thoroughly enjoyed opening all her presents (as well as most of Sophie’s!) at Christmas although was a little young still to understand much about Christmas and her first reaction to her Christmas stocking was to burst into tears and hand in back to Mummy (although once she had  woken up a little more she became more interested in the contents!)

We are still awaiting a date for Jessica’s cardiac catheter procedure but will let you know once we have a date for this.