Operation Number 3

So ever since Jonathan had his little upset at the Royal Free a few weeks ago, he hasn't been feeding too well.  Actually, he hasn't been feeding at all - when he had milk put into his stomach by his NG tube, it just seemed to sit there and not really get digested.

The doctors told us that often when babies have serious episodes like Jonathan did, their digestive systems can shutdown for a few days while everything else sorts itself out.  After a few days, things are supposed to start working again - but in Jonathan's case, it didn't really happen.

So yesterday, they performed a contrast study on him where they insert a dye into his stomach, wait a bit, do an x-ray, and then look to see where the dye gets to.  The dye in Jonathan seemed to get stuck around his duodenum again - which is the same place he was operated on last time where they thought there was a blockage.  They thought they'd fixed it last time by putting in a small bypass around the blockage, and also making a small hole through the membrane that was causing the blockage.

They're not exactly sure what's causing the blockage now, so they're going to have to operate on him again tomorrow morning to open him up and take a look.  One of the things they said it might be is scarring or stickiness caused by the last operation - but they won't know until they operate.  If all goes well, they'll be able to find out what's causing the problem and fix it up all in the one operation.

In happier news, Jonathan's been lucky enough to meet another two of his grandparents over the last couple of days - but them being new to being grandparents, we haven't worked out what Jonathan should be calling yet.  For now they're yehyeh Stephen and ma-ma Lynda, but I guess it will be up to Jonathan to decide what to call them.  He also got to meet his auntie Kath who took lots of photos of him ...

We'll post an update after the operation tomorrow.

93 days old!

Jonathan has spent another day in NICU, still connected to the ventilator and fast asleep. Despite being heavily sedated with a cocktail of morphine, vecuronium and midazolam, he still manages to suck on his beloved dummy like there's no tomorrow!

They think this most recent episode is related to an infection and possibly a swollen gut, although all the tests and X-rays can't find a reason for his swollen belly. There might be a few more tests they can do to check it out, but they'd prefer him to be slightly less fragile (and so would we)!

At the moment he seems very relaxed and peaceful, happy to let the ventilator take care of his breathing - hopefully he stays like this for the rest of tonight.

He's 93 days old today, and Tracy's been into the hospital 93 days straight visiting him! We're starting to get to know the staff and some of the other parents here at Tommy's quite well - so glad he's being so well looked after.

He gets to meet his other grandparents yeh-yeh Stephen and ma-ma Lynda on Sunday, as well as his aunty Kath. He loves meeting new people, and with any luck he'll be awake for it!

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Back on the ventilator

Jonathan was intubated again this morning & is now back on the ventilator because he was struggling with his breathing overnight. The doctors think it's probably due to his belly being distended (although they don't know why) meaning that there is even less space for his lungs.

They've given him some morphine to keep him calm & settled so he seems ok. We're also doing ok (worried, of course, but coping) but would be again grateful for your prayers.

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Still as cute as ever (to us at least!)

Here are a few photos from the last couple of weeks to make up for the lack of photos in the last post.

Blogging from my phone again so I'm not sure how they'll turn out - apologies in advance for any upside down photos!

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Taking it a day at a time

So another week has flown by in a flurry of activity as we spent the week trying to squeeze in time to get settled at our new place and building flat-pack furniture in between our time at hospital.

Jonathan was much better this week than he was the last week and was only on the CPAP for less than a day before going back to just being on oxygen through the nasal cannula.

However this weekend he was a bit sleepy again, his body temperature was a bit up & down and his blood tests showed that his infection markers went up again so they've restarted him on the antibiotics again as it seems he may have another infection. They don't know where the infection could be and whether he is recovering from it (the markers usually lag a little behind the actual infection) or whether it could get worse so to be on the safe side, he's been moved back up to the Intensive Care Unit where he can be more closely monitored.

During the rest of the week, he had actually been moved to the High Dependency Unit (one step down from the ICU) and had been pretty stable.  He only had a couple of incidences where his oxygen saturations went down suddenly and the main problem was getting his feeding started again because his tummy wasn't tolerating his feeds and was producing the greenish gunk (mainly bile) - the same thing as what happened after the operations on his gut.  As a result, the doctors have decided to give his tummy a rest for a few days so poor Jonathan is currently on an empty tummy again.  

He's also lost quite a lot of weight (600g or so) due to the dramatic events of the past couple of weeks and is down to around 3kg again so the doctors put in a long line for an IV drip so that he can get some much-needed nutrition and calories.  As the doctors were having difficulty finding veins in which to put in a cannula for his antibiotics, Jonathan now also has a new cannula in a vein in his scalp - to protect the cannula, the nurses put a little plastic cup over it so it looks like he's wearing a little party hat!

Unfortunately it seems that the only explanation that the doctors have been able to give us for the dramas 2 weeks ago was an infection - they suspect that a bug passed from his respiratory system to his blood stream, and because he's got so little energy in reserve to fight infections because of his other problems, he couldn't tolerate it like a normal person.

We had a difficult discussion this weekend with the senior consultant who told us that what happened might not be an isolated incident, and it might happen again if he gets another infection so we should try and prepare ourselves for it - not in a practical medical sense like learning baby CPR (although that would be useful), but mentally... we're still trying to get our heads around that and all the issues that come with it, given that most babies catch loads of bugs and it's inevitable they get sick at some stage...

Anyway, apart from that, for now we're just happy that he's been soldiering on, and that St Thomas' are doing all they can for him.  He got to have a go in his bouncy-chair today, and had a few big cuddles with mum and dad.  We also cut his fingernails for the first time yesterday, and gave his hands a good scrub too - he likes to put them in his mouth so they definitely needed it!

We'll send another update soon.

One less tube!

Jonathan was just taken off his ventilator, and is enjoying his first cuddle with mum in nearly a week. Both he and Tracy much prefer this arrangement!

He's on CPAP now which is a continuous flow of air to his little nose, and looks like a mini fighter pilot with his new hat and mask! At the moment his saturations are stable and we're hoping it stays that way!

We've been reading him the Magic Pudding today (thanks Airlie and Ben), and although he has no idea what a koala is let alone a pudding, he enjoys listening to out voices and it seems to calm him.

He's also been reunited with his favourite toy - his classical music mobile. As soon as it was turned on, he settled quickly and fell into a relaxed snooze to the tune of Mozart.

We're so relieved he's recovering!

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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!