The word of the day is ... extubate

After a somewhat unstable Tuesday and Wednesday, today, Jonathan appeared much better.

On Tuesday and Wednesday, his oxygen sats and blood pressure were all over the place.  When they tried to improve one, it fiddled with the other, so the doctors spent a lot of time trying to find the right balance.  They found he was very sensitive to adrenaline - which they used to bring his blood pressure and saturations up - but even the slightest whiff of it caused him to go from one end of the scale to the other.  

To complicate things further, when he started to wake up, he was wriggling around trying to pull all the tubes out, and then tried to cry - something he's unable to do while he's got the ventilator tube down his throat, which seemed to make him even more upset!  And then all of that commotion set off his saturation and blood pressure alarms too - so in the end, they said they needed to sedate him more and upped his morphine and clonidine, and when that wasn't enough, gave him some vecuronium which seemed to do the trick.  They also swapped the adrenaline to dopamine and dobutamine instead, and that seemed to help stablise him a bit further.

The physios were also called in to work on him to loosen the gunk in his right lung (they call it secretions), but during his treatment, he managed to dislodge his ventilation tube and cause his oxygen sats to plummet.  When that happened, the nurse looking after him ran to the other side of the room and pressed a big red button which sounded the crash alarm (complete with flashing lights - it reminded me of a fire drill) and within 3 seconds, about 10 doctors rushed in (where were they hiding?) and we got ushered out.  After a few minutes, they managed to reposition the tube and Jonathan seemed OK ... but his parents are still recovering from the scare.

When we went in this morning to see him (Thursday), they said he'd had a really stable night which was a great relief - his blood pressure and saturations were stable, and they were able to take him completely off the heart meds.  The only thing left to do now was to take him off the ventilator - but instead of just saying that, they talked a lot about "extubating" him.  Not knowing what "extubating" meant at the time, we were a bit worried about Jonathan having to go through some other invasive procedure ... but when it clicked that extubating just means to take a tube out (why didn't they say that in the first place), it all made sense (and we also found out that the opposite of extubate is intubate).

The ventilator he's using is a very nifty piece of equipment (and for some reason it's named Stephanie) - it ensures that he gets enough air, supports his own breathing, and lets him breathe more if he wants, and it also has a bunch of sensors so that the doctors and nurses can see exactly what his little lungs are doing.  The machine was giving all the right readings to indicate that Jonathan can breathe on his own, so they decided to extubate him around lunchtime today.  They sent us out of the room for this because it can be a bit uncomfortable to watch ...

But as with most things with Jonathan, it didn't go exactly according to plan.  They were able to get the tube out fine, but he wasn't too interested in breathing on his own.  They told us he did a bit of gasping, so they tried him on CPAP (which is a step down from a ventilator) but he didn't like that either.  They also but him on a nebuliser and gave him some other medication to try and open up his airways, but it didn't really help.  Eventually, he had to be intubated again - so for next few days, they're going to let him stay on the ventilator.  We were told at the end of the day that they think it's probably an inflammation of the throat that caused today's breathing problems (as opposed to a problem with the lungs), which can often happen when a baby needs to have tubes inserted quickly in emergencies.

They're still trying to figure out what caused the whole catastophe on Sunday night - the best explanation so far is a chest infection, so they're pumping him full of antibiotics to be on the safe side.  Some samples that were sent away to the lab came back indicating there was an infection - but they said infections usually don't cause babies to react in the way Jonathan did.  So, they're still scratching their heads over that one.

They're sending him down for an MRI tomorrow mainly to see if there was any damage caused when his heart stopped, and also to re-scan his brain as they're not totally in agreement with GOSH's assessment of his hydrocephalus ... so hopefully we'll have news on that soon.

Anyway, to sum it all up - Jonathan's much more stable today, but still in NICU.  His irregular heart is doing its thing and pumping enough blood around his body, and he should be off the ventilator in a few days time.  He also got his hair washed twice in two days so it's nice and fluffy and no longer smells of salt and vinegar and dirty socks...

And thanks everyone for your prayers and support over the last few days - it's made a huge difference!

Back to St Thomas'

So, on Friday, it seemed that all was going well with Jonathan being moved to The Royal Free which is much closer to home.  However, things took a dramatic turn on Sunday night ...

Here's a quick summary of what happened:

• On Saturday, we spent the day with him and he was fine.  His oxygen saturation were really good, and the nurse even commented that when he comes home, he mighn't need oxygen!  We were able to give him a bath (he had that salt and vinegar smell about him again) and play with him like we'd usually do...
• On Sunday, we spent most of the day with him, but noticed he was really exhausted, and a bit floppy.  He seemed like he wanted to wake up and play, but seemed like he was having trouble keeping his eyes open - but he's often like that when he's tired.  The nurse there was really good - she was paying us and him a lot of attention and making sure his saturations were OK, and they were fairly stable.  She said a lot of babies that get transferred can get quite tired for a few days after a transfer, as they take a while to get used to new people and surroundings, and that Jonathan's tiredness was probably down to that.
• On Sunday night at 11pm, we got a call from one of the doctors at the Royal Free to say that Jonathan's heart had stopped, and that he needed CPR to get his heart and breathing going again!
• We rushed over to the hospital, where we found a team of doctors working on Jonathan trying to stabilize his heart and breathing.  The doctor told us it took 10 minutes to get his heart beating again, and that although they'd managed to get it going, he wasn't able to breathe on his own so they had to hook him up to a ventilator.  They weren't able to get a cannula inserted to a vein to give him adrenaline, so had to inject it into the bone.
• We went through to see Jonathan, and to our relief he was awake and his eyes were open and he was moving.  He recognized us and followed our faces around which was another relief, but then we were told we needed to make room for the other doctors who had just arrived who were going to try and insert another cannula to give him some drugs  to help manage pain and put him to sleep.
• The Royal Free had to negotiate a bed for him back at St Thomas' - they were originally told there were no other beds in the whole of London for really sick babies.
• The CATS team arrived at about 1AM to transport him, but while they were assessing him, his heart stopped twice again and he needed to be resuscitated!
• At around 5AM, they managed to stabilize him and get him into the ambulance.  We all went to St Thomas' in the ambulance, and he was taken to a bed in PICU.  A cardiologist came and gave him an ultrasound and said nothing had changed in with his heart, so wouldn't need surgery immediately.  He was then transferred over to NICU.
• For the rest of Monday, they kept him on the adrenaline and also on the ventilator.  They zonked him out with an injection of something so that he would let the ventilator do all the breathing.  The nurses were really surprised to see us back in NICU after Jonathan only left them a few days ago ... they were really nice to us though, and managed to find us a room where we could stay during the day and night as we hadn't slept for ages ...
• Today, he was a bit up and down.  When he's sedated, he's mostly fine.  When he starts to wake up, he seems to wriggle around a lot and tries to breathe against the ventilator so they have to keep on sedating him.  They're also trying to find the right balance of blood pressure and air to keep him stable, but with so many variables and his own unique combination of problems, it's quite challenging.  When we left the hospital, he was fast asleep and although his blood pressure and oxygen sats were a bit on the low side, he was stable... hopefully he remains like that for the rest of the night!

Anyway, hopefully he'll be stable overnight and we'll be able to get a bit of rest.  Please pray for Jonathan if you can.

On the move

It seems Jonathan wanted to join in on the fun of moving - he was transferred today to the Royal Free, our local hospital.

It felt quite strange last night when we were packing away his things at the neonatal unit at St Thomas' after 10 weeks (plus 1 day) there. We'd gotten to know some of the nurses, doctors & parents there quite well & in a way were starting to feel quite at home there.

The local hospital is quite different - much smaller & quieter & not quite as well-equipped & high tech as St Thomas', it made us realise how spoilt we'd been at St Thomas'! Jonathan has also lost his window spot with a view of the London eye and is now in a corner spot in a room with no windows, ah well...

It's also a little scary because there's a new team of people looking after Jonathan & they don't yet know him very well so we're hoping they make the right decisions for his care. They're also not as experienced with dealing with complicated babies - the nurse today was telling me they only get one baby with a stoma every 6 months (at St Thomas' we'd met at least 5 other babies who had a stoma while we were there) and the nurse was actually asking me to talk her through how to change a leaky stoma bag! So it's been quite a change for us all!

The good thing is that they seem to be preparing us for taking Jonathan home so hopefully we won't have to be at the local hospital for too long. Jonathan will most likely still need to be on oxygen when he comes home so the community nurses will be visiting our flat to get us set up for oxygen tanks. As Jonathan will also still be having tube feeds, we will also need to be properly trained on how to test the nasogastric tube & feed him using the tube, as well as how to pass the tube into his stomach in case he pulls it out. Sounds like we'll be super busy when he does come home!

I'm attempting for the first time to blog on my phone & I haven't figured out how to post photos so I'm afraid there won't be any for now...I'm just hoping that this post will actually work or otherwise I would've just spent a long time typing on my phone for nothing! Ok, fingers crossed that it works...

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Our little mystery child

It's been another busy week and we're both pretty exhausted as we've been preparing for our house move on top of our usual hospital visits & work (for Chris).

Jonathan has been doing well this week although he is still on varying amounts of oxygen that the nurses adjust based on how hard he seems to be working to breathe and his oxygen saturation levels.

None of the doctors seem to be able to figure out exactly what is causing Jonathan's breathing problems but their best guess is that it is mainly due to his heart problems.  The cardiologists however are still scratching their heads about how exactly the 2 problems are linked as the heart condition that Jonathan has been diagnosed with is not usually associated with breathing difficulties.

The type of heart condition Jonathan has also does not usually need to be treated with diuretics and so the cardiologists aren't convinced that the diuretics are actually helping Jonathan's breathing problems even though they seemed to be working over the last few weeks.  The cardiologists' plan is therefore to gradually wean Jonathan off his diuretics and to put him on Propranolol, which we were told may possibly help his circulation and therefore his breathing and is a drug that was used in the "old school" way of treating heart conditions like Jonathan's.  The cardiologists will then observe Jonathan for a week before readjusting his medication if needed.

The doctors also want to get Jonathan transferred back to our local hospital (the Royal Free), seeing that they are not planning for him to undergo any more surgery at the moment and so he would not need the expertise of St Thomas's for now.  We would then go back to see the cardiologists and general surgeons at St Thomas's for regular visits so that they can keep an eye on his progress and plan his future surgeries.  So far there are no free cots in the paediatric unit at the Royal Free so we're still at St Thomas's until there is a space.

We'll also be moving house this weekend.  As we've yet to get a phone line and internet set up at our new flat, we will probably be unable to blog until we get connected again...but never fear, if there is any big news on the Jonathan front, we will find a way to update our blog and we'll be back on the blogging bandwagon as soon as we get the broadband up & running at the new place!

For now, here are some photos of Jonathan from the past week and hopefully they'll give both grandparents and non-grandparents a good dose of Jonathan until the next post!

Bath time - this photo has been censored with strategically-placed bubbles...

This is why they warn you about working with babies - we took multiple shots but couldn't manage to get any photos where he was not pulling a face or moving around in a blur.

Hanging around with daddy:

Back in the bouncer again but looking less dejected this time: 

Dreaming of having tea with the queen:

Hanging out with his floppy dog friend:

Jonathan's kung fu master pose:

Day trip

Jonathan got to leave St Thomas's hospital for the first time ever today for a mini trip out to Great Ormond Street Hospital for his neurology appointment.

It was quite an elaborate operation as he was put in a special transport incubator for babies and was taken by ambulance with 2 ambulance drivers and a nurse escorting him for the 15 minute ride.  The nurse told us that he seemed to really enjoy the trip and was happily looking out the window at the trees and lamp posts going by.

We also got some good news from the neurosurgeon who told us that he doesn't think that Jonathan actually has hydrocephalus - hooray!  His conclusion was based on some tests he did on Jonathan's reflexes using one of those small rubber hammery things, the MRI scan images they'd taken at St Thomas's a few weeks ago and the measurements of Jonathan's head circumference that were taken at St Thomas's over the weeks.

The neurosurgeon said that the channels between the 2 sides of Jonathan's brain developed a little differently than in normal babies but he also said that that isn't so unusual and it may make it seem on scans that there is more fluid than there actually is.  He didn't absolutely rule out the possibility of hydrocephalus developing later on but he was satisfied enough not to need to see Jonathan again on the brain side of things.  He did suggest however that Jonathan is followed up on the spinal abnormalities (a few of his vertebrae are fused together rather than being separate) when he is around a year old.

Overall we are really happy with how the neurosurgery appointment went and are very relieved that it seems Jonathan brain is ok!

Here are a couple of photos of Jonathan with his transport incubator:

And here are a few other random photos we've taken over the last few days:

Musical Wards

Jonathan's getting close to having stayed in each ward in the neonatal unit of St Thomas', after being transferred from SCBU (special care) back to NICU (intensive care) yesterday, and then up to HDU (high-dependency) today.  All this moving around is because of his breathing and oxygen saturations.  He does seem to like being wheeled around though.

Yesterday morning, the doctors transfered him to NICU not because his condition had changed dramatically, but so he'd get better monitoring of his breathing.  During that night, they'd noticed his saturations hadn't continued to improve as they had over the previous days with the diuretics, so they increased his dosage and sent him off to NICU for monitoring.  In NICU, there's one nurse for every two babies, so it's easier for him to be monitored there.

In NICU, because he still had low saturations, they were going to put the CPAP breathing tubes on him.  These are the same breathing tubes he needed when he came out of his two stomach surgeries, where the tube goes all the way in down to his lungs, and forces air in to make sure he breathes, and is stuck on face with a whole bunch of sticky tape - which I can't imagine to be very pleasant.  CPAP is different to the oxygen that he's currently on which just runs into his nostrils.

Anyway, when the nurse brought around the CPAP machine, it turned out to be broken, and in the time spent looking for a replacement, his saturations fortunately improved - so they decided he didn't need it after all!  To celebrate escaping another set of breathing tubes, we let Jonathan have a go in his new bouncer.  It's battery operated and bounces and plays music when you turn it on... but he didn't seem to be too excited about the experience...

Maybe he's just a bit too small for it right now...

We also tried to read him a story but I think he was more interested in sucking on his dummy.

Speaking of dummy's - he's had a lot of dummy action lately.  Because of his weak breathing, the doctors have decided that he can't be fed through his mouth for the time being, so breastfeeding and bottle feeding are out.  For now, he only gets fed down his NG tube. But, to help him remember how to suck, and also so he associates sucking with food, whenever they put food down his tube, they also put him on his dummy.  Jonathan loves his dummy, so this suits him just fine.

Anyway, after spending a day and a night in NICU, he was today moved back into HDU.  In HDU, they also have one nurse for every 2 babies, but the babies are a bit stronger and don't need as much attention.  His saturations remained fairly stable for the day - they dipped and the alarms went off a handful of times, but that was only when he was upset about something (hungry? tired? nappy? itchy?) so not really too much of a concern.

The doctors are still trying to get Jonathan to put on some weight and grow more, as he's now over 6 weeks old, but still weighs the same as when he was born.  They still think he's burning all his food on breathing, so they're going to fortify Tracy's breast-milk by adding energy in the form of a powdery supplement (I forget the name) which they just mix in before putting it down his tube.

Tracy now has the tough job of having to keep the milk supply up without actually breast feeding Jonathan, but by expressing every couple of hours.  We might have to bust out Por Por Emily's lactation-enhancing fish and papaya soup recipe that she left ...

Striking a balance

Good news!  Jonathan's had a bit of an improvement with his breathing since starting on the diuretics - when he's relaxed his breathing is now very good.  But, it still goes a bit crazy when he's cranky, so because it fluctuates, they don't want to take him off the oxygen yet, so he's still got an extra set of tubes going to his nose.

The diuretics actually made him lose all the weight he'd put on over the last few days, so it did turn out to be just fluid!  Jonathan's birthweight was 2.7kg, and after the diuretics, he now weighs only 2.785kg.  The cardiologist who saw Jonathan today said he hasn't really gained weight because he spends all his energy on breathing.  So with the help of these diuretics he should find it easier to breathe, and then hopefully put on some weight.  And the more weight he gains, the safer it will be for them to operate on his heart in a few months time.  The tricky part the doctors have to figure out is the right dose of diuretics that will allow him to breathe well, but also process enough food so that he puts on weight...

This is Jonathan's monitor which keeps an eye on his pulse (the top blue line), oxygen saturations (the middle green line), and breathing rate (the bottom white line).  They're aiming to keep his oxygen saturations between 75 and 85, and his respiratory rate should be around 60 or so... so he wasn't quite on target when we took this photo.

Anyway, despite his problems breathing, he still has enough energy to pull some strange faces at his mum and keep both us and the nurses entertained.

"Who's this strange lady who keeps on making funny baby noises at me?"

"If only she knew my nappy is wet and my bottom is soggy!  Change me this instant!"

He also had lots of fun playing with his new toys this week.

"Thanks Wing-Sze for my floppy dog who likes to sleep on my belly!"

"And thanks Matt and Rach for my soft teddy bear who likes to hug me around my head!"

"And thanks Christian and Ros for my cuddly black cat (that came with a few extra goodies to keep mum and dad happy)!"

"And thanks Por Por Emily for my strange dog that seems to like wearing sheeps' clothing!"