A much happier little Jessica

The last couple of days have been quite stable.  Jessica is continuing to do well and is back to her usual happy self which is wonderful.  We have had lots of babbling and cooing as well as some lovely big smiles over the weekend.  All her observations have been stable and the amount of oramorph she is having is gradually being reduced.  She is occasionally taking small amounts of Monogen by bottle but most of it goes down her feeding tube now and we have resigned ourselves to the fact that she is likely to go home with a nasogastric tube in situ again although will keep trying to encourage her to drink it from the bottle!

 Last time she had an NG tube, the biggest problem we had was with reflux and vomiting and needing to give smaller feeds more frequently.  So far though, Jessica is managing to tolerate 4-hourly feeds down the tube and has kept them down so tube feeding this time around will hopefully be a little less stressful.  

It has been a quiet weekend on the visitor front with just godmummy Katy coming to visit, but it has been lovely to spend time together as a family (as Michael has been back home and working during the week).

More steps in the right direction

Jessica has continued to do well without the oxygen and her sats have stayed in the 80s which is fabulous.  She pulled out her feeding tube yesterday morning and we were hoping that she would take bottles well enough for it not to have to be replaced, but she seems to have worked out now that it is yucky Monogen in the bottles and isn’t very willing to drink it now so we have been giving it down the tube again.  On the plus side though, she has started having solid food again and is doing really well with this – she seems much happier with this than she was before we went back into hospital and seems quite willing to try new tastes.  Our lovely friend Nick popped in with a few pots of MCT-diet purees for Jessica – thank you very much, Nick!

By yesterday evening, Jessica was no longer on the ECG monitor and her central line had been removed so cuddles were much easier.  She was quite overtired and irritable though and needed a little sedative to help her sleep.  A good night’s sleep seemed to help though as today she has been so much happier and smiling a few times – definitely becoming more like her normal self which is a joy to see – although she is definitely unimpressed by the doctors at the moment!  She did enjoy visits from Nanny, Auntie  Loraynne and cousin Keely yesterday though and also had a lovely visit from Uncle Adrian and Auntie Julie today.

Jessica was moved out of high care into one of the bays this morning and is only having her sats checked intermittently now so we are able to walk around the ward with her.  She has been happily playing with her toys today and is quite interested in watching the other babies on the ward.  Her wound was redressed this afternoon and is healing well, although still a little oozy at the moment.

Going back up to Ocean Ward

Jessica had a very settled night and seemed to be suffering less with the morphine withdrawal. After the morning round, the plan was for Jessica to stay on PICU for another 24 hours as she needed to either be off the optiflow oxygen or paraflu negative in order to go up to Ocean Ward. She had another ultrasound in the morning to check the fluid around her lung and this showed that there was no longer any significant amount of fluid which was very encouraging.

By the afternoon, her latest sample had come back as negative for parainfluenza so this has finally gone and she had also managed to come off the optiflow and back on to normal oxygen.  We hadn’t expected that both the aims from the morning would have been achieved so soon and that we would be ready to go to Ocean Ward quite so quickly!  

By the time we transferred up to Ocean Ward in the evening, Jessica had amazed us once again by managing to achieve sats in the high 80s without any extra oxygen being needed!  She is starting to take the Monogen by bottle again and her antibiotics have also finished today as well so she has made quite a lot of progress in one day – praise God!

Morphine withdrawal

Jessica had another chest X-ray in the morning as the bottom lobe of her left lung sounded quieter when the doctors did their check this morning.  The chest X-ray showed that there is a small amount of fluid around the left lung and so she also had an echocardiogram and ultrasound to look more closely so the team could decide whether any further action was needed.  At present, the amount of fluid seems quite small and so the plan is to observe and repeat the chest X-ray in a few days (or sooner if Jessica has any difficulties with breathing).

 

The morphine infusion has now been stopped and Jessica is now on oramorph.  She has been showing signs of withdrawal today – mostly irritability and sweatiness which has made her quite unhappy although thankfully so far she seems to be suffering less from withdrawal than she has done previously.  There are moments when she is awake and fairly settled and she is definitely soothed by mummy or daddy’s presence during the more unsettled moments.  The amount of morphine she is having will gradually be reduced to help minimise the side effects from withdrawal.

Her wound was also redressed today and looks much better than it did last week which is encouraging.  We were also able to dress Jessica in a babygro for the first time in over a week and Louise managed to have a very brief cuddle.

Off the ventilator

As Jessica has been doing so well and her chest secretions were getting less, the team decided that she was ready to be extubated and so her ventilator was removed this morning and she is now back on optiflow oxygen.   So far her oxygen saturation levels are staying in the right range and she is coping well.  She is having saline nebulisers every four hours or so to help loosen up her chest secretions and this also seems to be helping.  Now that the tube has been removed, she is able to voice her objections to things – this morning her cries were very hoarse but this has improved over the course of the day and at one point she was making “ma-ma-ma” sounds which was lovely to hear.

She is quite woozy today as a result of the morphine and sedatives that have kept her comfortable and settled over the last few days.  The nurses are observing her closely for signs of morphine withdrawal as she may experience this again after having been on morphine for a few days now.  We are hoping she won’t experience too much withdrawal this time as last time she was quite distressed by it.  The morphine infusion has been reduced today and although there are moments when she focuses on us, mostly we can see from her eyes when she looks around that she is ‘away with the fairies’ a bit, but so far they seem to be nice fairies!  

Grandma and Grandad popped in for a visit this afternoon and were pleased to see Jessica looking better than she did when they last visited – her breathing is much easier and less rapid now so hopefully the paraflu virus is on the way out at last!

Another settled day

It has been another stable day on PICU for Jessica.  She is still on the ventilator but the amount of oxygen she needs has reduced and the secretions on her chest seem to be looser today which is all encouraging.  We had a visit from one of the cardiology consultants this morning to reassure us that they hadn’t forgotten about Jessica (having seen very little of the cardiology team over the past few days), it was just that her heart function was fine and our reasons for remaining on PICU were due to the parainfluenza infection.

She needed a blood transfusion later in the afternoon as her haemoglobin levels were a little on the low  side but otherwise all has remained well and her oxygen saturations are stable.  She has had some wakeful moments but has been more settled and less feisty.

Staying stable

After the drama of the previous night, it was quite a relief that Jessica had a very settled night last night.  She has stayed on the ventilator today and has had the occasional wakeful moment but has mostly been sedated as when she is awake, she is very wriggly and feisty, letting us know that she is quite unimpressed by all the tubes and wires.  As one of the doctors described it, she “likes to go from zero to hero” – one minute sedated, the next awake and trying to remove everything attached to her!

She still has quite a lot of secretions on her chest although these seem to lessening and her CRP and white cell count have now decreased, indicating that the infection is getting better.  Overall, it has been quite a settled day – much needed after a week of riding the PICU rollercoaster!

A bit of a bump in the night

Jessica had a bit of an eventful night as her ventilator tube got blocked overnight which resulted in her sats and heart rate dropping quite dramatically and she needed chest compressions to help her heart rate pick back up again. A chest X-ray afterward showed that the position of the tube was a little low and as she has had a lot of secretions on her chest, the team thought that this was probably what caused the blockage. Thankfully it was a short-lived episode and we have been reassured that it is not very likely to recur and there shouldn’t be any long-term consequences.

The chest X-ray did show that her chest was a little clearer and the left lung more open although there are still a lot of secretions in the top of the right lung. The plan is for Jessica to stay on the ventilator over the next couple of days so that she doesn’t have to work too hard with her breathing and she will continue to have physio and suction. A recent specimen has shown that the parainfluenza is still present and it will just take time for her to get through this infection.

Thankfully after the excitement of this morning, today has been a fairly stable day. Jessica has remained sedated and on the ventilator and her observations have generally been within the expected ranges.

A step in the right direction!

Jessica had another good night and was quite alert when we arrived on PICU in the morning. She didn’t want to be touched or moved, but was quite happy lying on the cot and playing with the toys attached to the side of it. We had a visit from the surgical registrar first thing in the morning to discuss putting in the vac pump. He explained that it was a simple procedure and that as the infection improved, Jessica would probably need to have progressively smaller pumps put in every few days before them finally being removed and this would be done in theatre each time. We were therefore preparing ourselves for a bit of a longer stay than previously anticipated.

As Jessica was due to go to theatre around lunchtime and was needing quite a lot of oxygen, the team felt that it was safer to reintubate her on PICU prior to going to theatre. Louise has been present a couple of times when Jessica has been intubated and felt quite comfortable to stay; however it took a little longer to intubate this time and Jessica’s sats dropped quite low before the ventilator was in place which caused quite a lot of anxiety. Thankfully they did go back up quite quickly but on reflection, perhaps it wasn’t the best idea to stay and watch!

As Jessica is very good at ‘losing’ her cannulas, the team decided to put a PICC line in for the IV antibiotics as this would last longer but this proved to be quite difficult and so she had a central venous line put in instead.

Nanny arrived just before Jessica was due to go off to theatre and managed to see her for a little while before she went off to theatre. An hour later, she was back on PICU and we had some positive news at last. The wound infection appears to be superficial – there are no signs of infection in the sternum and so she didn’t need to have the vac pump after all. The team had just cleaned her wound and replaced the dressing.

However, a chest X-ray prior to going to theatre has shown that Jessica’s left lung has collapsed again and she has a lot of secretions on her chest as a result of the parainfluenza which have required quite a lot of physio and suctioning and has also meant that her oxygen saturation levels are a little on the lower side. The plan for tonight is to keep her on the ventilator so that she can continue to have physio and suction to help clear her lungs.

Awaiting another trip to theatre

Jessica had a fairly good night and thankfully so far her temperature has been normal which is a good sign in view of the infection in her wound. Mr Haw, the surgeon, came to see her this morning and decided that she needed to go to theatre to have a vac pump put into her wound to help keep the pus drained out of the wound and this was originally planned to take place later in the afternoon. However, due to an emergency case in theatre, Jessica was unable to go to theatre today and so hopefully this will be done tomorrow. In the meantime, the team are keeping a close eye on her wound and she is on antibiotics to treat the infection.

We have also moved beds to the other side of the unit to the ‘infections’ side – we were in a corner bed away from the other beds to avoid transmitting paraflu to the children and babies coming out of surgery but this has been on the ‘clean’ side of PICU and as the unit is getting busy, this bed was needed and so we were on the move again! We were concerned at first about any potential risk of Jessica getting yet another infection but have been reassured that the other child near her also has paraflu so this shouldn’t be a problem.

The antibiotics that Jessica is on have also resulted in her having a very nasty-looking nappy rash which has turned out to be thrush and so she is now also on nystatin drops and has canestan cream to treat that – poor little love! She has also had several attempts to have cannulas put in today as she is so wriggly that the ones she has don’t seem to last very long – not very helpful when on IV antibiotics!

Another infection

This morning’s blood results showed that Jessica’s CRP level and white blood cell count have risen again and we were quite relieved that she is already on antibiotics. Her wound was looking less red than yesterday but later in the day we noticed that it was looking a little raised. The surgical registrar came to review and opened the wound slightly which resulted in quite a lot of pus oozing out so it seems clear that there is an infection in the wound. It has been cleaned and re-dressed and the team will review it again in the morning – hopefully the antibiotics that she is already on will already be helping with this latest infection.


Other than the infection, Jessica has had a fairly good day and has been much more settled. She is still working quite hard with her breathing but this gradually seems to be improving and the amount of oxygen that she is on has been reduced. Her sats also seem to be a little higher today. She still feels quite warm, but her temperature has stayed normal and she is taking her Monogen feeds well by bottle so that is all quite positive. She also had a visit in the evening from Uncle Adrian and Auntie Julie.

Battling the bugs

Last night’s sedative seemed to work quite well and Jessica managed to have a good night’s sleep. Her blood results in the morning showed that her CRP level and white blood cell count were raised from the previous day, indicating infection, and the team were concerned about her getting a secondary bacterial infection on top of the parainfluenza. Her wound was also looking a little red around the stitches and so she has been put on gentamicin and vancomycin to try and nip any possible infection in the bud.

Jessica had a few more moments of being interested in her toys, what was going on around her and pulling Daddy’s nose although was a bit overtired during the day and not really wanting to sleep very much, although she did settle quite well by bedtime. She also seemed to be working hard with her breathing and felt quite warm although her temperature was normal. She had another chest X-ray in the morning and all looked fine on this which was quite reassuring. Her oxygen saturation levels have also been a little better today.

She had a visit from Nanny, Auntie Loraynne and Auntie Maxine in the afternoon and then later in the day, Dr Archer and Dr Manning from Oxford also popped in to say hello as they had their big team meeting in Southampton.

A stable day

Jessica had another stable night although the nurses reported that she hadn’t really wanted to sleep very much and so consequently we had an overtired and very grumpy Jessica throughout most of the day! Despite her grumpiness, she was starting to be a little more like her usual self and was more interested in her toys, playing with her dummy and with the lights that the nurses put around her cot to amuse her.

Her oxygen saturation levels have remained on the low side throughout the day and she is still breathing fairly rapidly but as things have been stable, the team decided just to observe for today and to do another chest X-ray tomorrow (particularly as she has had quite a lot of chest X-rays in the last couple of days). Her lungs both sound like there is good air entry and so the extra work with breathing may just be due to the paraflu virus.

We had some more time with her out of the cot for cuddles this afternoon which has been lovely and Grandma and Grandad came to visit in the evening and had a little bit of time with Jessica before she settled down to sleep. As she had been so awake and overtired, she was given a sedative to help her get a good night’s sleep tonight.

Another rollercoaster day

After a stable night, it looked as though we were going to be heading back up to Ocean Ward again. However, one of her chest drains was sounding quite noisy and on closer examination the hole where the chest drain was inserted had got a bit bigger and the team thought that this drain was probably sucking air in and out and causing air to get into the lung cavity. They decided that as there was no more fluid draining, it was probably best to remove the chest drains.

We got to have a few cuddles whilst we were waiting for the doctors to come and remove the chest drains which eventually happened in the early evening. Jessica was still having to work hard with her breathing afterwards, needing increasing amounts of oxygen to maintain her saturations. A chest X-ray showed that she had another pneumothorax (air in the lung cavity) – this time there was a significant pocket of air around her right lung and a smaller one in the left side.

The team decided that they would pass a needle into Jessica’s chest and aspirate the air out of the right side. They managed to remove a reasonable amount of air (25ml) although Jessica’s sats were still on the lower side and she was having to work a little harder with her breathing. A further chest X-ray showed that the situation on the right side had improved and the lung expanded and the left side was no worse than before. Since the air pocket on the left side is smaller and harder to reach (as well as close to her heart) they decided not to try and remove the air this side. Jessica’s blood gases have been fine showing that she is getting sufficient blood flow and the lungs are working well enough, so the doctors have decided that they will leave her alone for now and observe overnight in the hope that the extra air on the left side will reabsorb. Potentially she may need to be put back on the ventilator and have another chest drain put in but we are hoping that things will stabilise again overnight.

It seems strange compared to previous operations that she is so awake so soon after the surgery but she is so much more expressionate these days. Her big sad eyes sum everything up and she looks up at you to say she is fed up and poorly. However, at least she hasn’t suffered any morphine withdrawal so she hasn’t exhibited abnormal behaviour and appears to be sleeping okay, just the permanent look of weariness. An attempt to cheer her with some of her toys was mildly successful tonight. She showed some interest for a few minutes but then it was a bit much and she was beginning to get agitated so we let her rest.

PICU ups and downs

Jessica had a nice quiet night on PICU staying on the ventilator and everything remained stable overnight. A chest X-ray in the morning showed that her left lung had re-inflated and so she came off the ventilator again and went back on to optiflow oxygen. However, her temperature was a bit high during the morning and she needed to be suctioned fairly frequently as there were quite a lot of secretions on her chest and so a sample was sent off to the lab to check for infection, although in the meantime, Jessica was already on antibiotics.

The sample came back positive for paraflu, a cold/flu-type virus, which we suspect was shared by Louise who has had a fairly heavy cold over the last week or so. Thankfully though, Jessica’s temperature has now come back down and whilst she still needs to have regular suctioning to remove the secretions, she doesn’t seem to be too unwell as a result of this and hopefully this will continue to be the case. It did mean that we had a little move across PICU into a single bay in the corner though.

Jessica has also had one of her chest drains removed today and had some time out of the cot having a lovely cuddle with Mummy which was great. She has been a little more awake today and starting to show a little interest in what is going on around her so seems to be feeling a little better than she has been. She is also off the morphine and seems much more settled generally.

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.