Back on PICU

Jessica had a fairly stable night up on Ocean Ward and all seemed to be going well but then as the day staff came on shift, her oxygen saturation levels started to dip and the amount of oxygen she was having had to be increased. The team from PICU was called to assess and we thought we were heading down but then things stabilised. A chest X-ray showed that there was some air around the left lung which was causing it to collapse slightly but as Jessica’s chest drains seemed to be working well, it was hoped that the air would come out through the drain and things would improve. Jessica had an echocardiogram which showed her heart function was fine and her sats had come back up so the situation seemed to be improving.

However, as the day wore on, her saturation levels continued to fluctuate and she seemed much less comfortable than she had been. The consultant from PICU came back up to assess and a second chest X-ray showed that Jessica’s left lung had collapsed and so the decision was made to head back down to PICU so that Jessica could be sedated and put back on the ventilator to help her with her breathing as she was clearly having to work quite hard.

So we are back down on PICU again with Jessica now on the ventilator and things are currently stable. She has had another chest X-ray and the lung looks better so the plan is for a quiet night, keeping Jessica sedated and stable and then see how things are in the morning.

A quick stay on PICU

It was such a relief to finally be able to go and see Jessica on PICU after her surgery yesterday. As always, things were a little up and down for the first few hours but Jessica seemed to be doing very well. Later in the evening, when she was waking up a little and no doubt finding the ventilator irritating, she decided to extubate herself which caused a bit of drama as her sats dropped down to 28 whilst the team were rushing to ventilate her with a bag and mask! Thankfully though, once she was having oxygen again, all was fine and the team on PICU decided that as she was managing to breathe for herself with optiflow oxygen given through nasal specs, she didn’t need to have the ventilator put back in!

Having woken up thoroughly by late evening, it looked like the night staff were going to be in for a long night as Jessica was very, very restless and much more aware of all the drains and tubes that were coming out of her than she had been the last time, which was making her very cross. She was clearly quite tired but the attempts to try and soothe her were only partially successful. She eventually managed an hour here and there of drug-induced sleep but by morning, her little eyes were very red from all the constant rubbing making her look a little like a panda.

We discovered during the morning that slipping an arm under her head to make her feel like she was being cuddled worked really well to settle her and by the afternoon she was much more settled. Her central line was removed and as things were stable, the team on PICU were happy for her to be transferred up to Ocean Ward by evening which was much sooner than we had anticipated – well done Jessica!

However, it seems that the chylothorax (the leaky lymphatic duct) which she had after the last surgery has returned once again which is a bit of a shame. It means that Jessica has to have Monogen again rather than breast milk and so Louise is back to expressing in the hope that Jessica can go back to mummy milk at some point in the future. On the plus side, so far she has been taking this by bottle and we are hoping that she will continue to do so and that her feeding tube can be removed sooner rather than later.

At present, she still has several chest drains in place and is on morphine but is much more settled than she was last night so hopefully she will have a better night tonight. Her observations have been fairly stable and she seems to be doing well – let’s hope this continues to be the case!

Another step taken!

Mr Haw has just been up to Ocean Ward to let us know that Jessica’s latest surgery has been successful. However, the pressures in her pulmonary arteries are a little on the higher side and the team are concerned that she has grown extra blood vessels around her lungs (known as collaterals) as a response to having lower oxygen saturations which may be causing this increased pressure. If she doesn’t progress as well as they would like during the rest of today and overnight then it may be that she will need to have a cardiac catheter procedure done during the next 24-48 hours to place coils inside these extra blood vessels to block them off.

She is being transferred down to PICU at the moment and we are hoping to be able to see her at some point in the next hour or so. Thank you so much to everyone who has been keeping our little miracle in their thoughts and prayers – we have been so blessed to be able to take another step forward in Jessica’s journey today.

Easter and return to E1

It was lovely to be home with Jessica for Easter weekend – she met some of the members of Churches Together in Uxbridge (CTU) who have been praying for her on the Walk of Witness on Good Friday and had a wander around the church labyrinth which Michael had been busy building in the run-up to Easter. She also had her first taste of Easter egg which she quite enjoyed and had a lovely evening with Grandma and Grandad on Easter Sunday.

We are now back on Ocean Ward ready for Jessica’s surgery tomorrow. She is first on the list so will probably go into theatre around 8.30am. As she had most of the pre-op tests last week, she didn’t have to have lots of blood tests and scans today which was good, although she has been weighed and has gained a little bit taking her up to 5420g (11lb 15oz). The consultant anaesthetist has been to see us and has prepared us for tomorrow’s operation being quite a challenging one in view of Jessica’s history and we are praying that she will continue to be a little fighter. Please continue to keep us in your thoughts and prayers – we will update as soon as possible after the surgery tomorrow.

Surgery - new date

We have now been told that Jessica's surgery will be scheduled for Tuesday morning as today's theatre list is quite full. Thankfully the decision to postpone the surgery until Tuesday was made before Jessica had to go nil by mouth so she didn't miss out on any feeds (although she did her best to make up for lost time yesterday!)

We are going home for Easter weekend and will be coming back on Easter Monday to prepare for the operation. Jessica's oxygen saturations have been a bit borderline with regards to what the team would be happy with and so we will still have a bed on the ward over the weekend so we can come and go as needed, particularly if Jessica's sats drop.

We will update again when we are back on the ward, please continue to keep Jessica in your thoughts and prayers over the coming days.

Rescheduling the surgery

We arrived on Ocean Ward yesterday morning as Jessica was scheduled to have her surgery today. As always, the day we arrived was a busy one with lots of tests being performed – blood tests, echocardiogram, chest X-ray, sats monitoring etc. and preparing for surgery. As Jessica is over six months, she has outgrown the nursery and we are in one of the other bays which means that Louise can sleep next to her cot.

We were expecting to go into theatre around 11am as Jessica was second on the list but as is often the case, we were waiting longer than anticipated and it was around 1pm before we were told that we were about to go into theatre. However, the surgical team then had an emergency case which meant that today’s surgery for Jessica had to be cancelled and the team would try to reschedule it at a later date. Jessica had been nil by mouth for ten hours by this point so was very happy to be able to have a feed again!

At the moment we anticipate that Jessica’s surgery will be taking place tomorrow afternoon although if there are delays, then the plan is that we will go home and come back in again on Easter Monday ready for surgery on Tuesday. In the meantime, Jessica is fine although her oxygen saturations are again a little lower than they have been at home. She had a visit from Katy yesterday and the Royal Navy motorbike club visited the ward this afternoon to deliver Easter eggs and cuddly toys for the children.

We will update again tomorrow – please keep us in your thoughts and prayers as we prepare once again for surgery.

Getting ready for another step

Jessica has been doing well over the last few days and thankfully her oxygen saturation levels have been fairly reassuring. Her weight gain is still slow but she is at least still gaining weight and is now up to 5380g (11lb 13oz). She is doing really well with her solids – pear puree and mashed avocado seem to be favourites at the moment.

Jessica has been spending time with lots of family members over the past few days – going to cousin Keely’s 16th birthday party last week and having Auntie Maxine come to stay for a couple of days whilst Michael was busy doing sound for Pastiche Musical Theatre’s production of Carousel. We would like to say a huge thank you to Pastiche for choosing Little Hearts Matter as their charity for this show – the proceeds raised from the bucket collection, raffle and programme sales raised £916.78 for the charity which was amazing – thank you so much.

We are all set to go into hospital tomorrow ready for her next operation on Wednesday and will keep you updated over the next few days as to how things go. Please keep Jessica in your thoughts and prayers as she takes another step on her journey.