Back to the waiting game again

It's been a week since Jonathan's marathon operation and he's been slowly recovering.

The most promising development so far is that his gut & stoma started working yesterday. We were very excited when the poo started to appear in his stoma bag - apparently the night nurses were cheering him on when they first spotted it so we're not the only ones getting excited about poo!

Apart from that it's just been a whole lot of waiting - waiting for his aspirates to decrease & have less of the green bile, waiting for the redness in what appears to be an infected stitch in his scar to die down and most importantly waiting for his belly to get less distended so that they can start feeding him again & also take him off the ventilator.

Some days the long wait seems more frustrating than on other days but hopefully the wait will be well worth it when he's feeding & off the ventilator & we can get him out of his cot for cuddles again.

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Hairy Maclary from Donaldson's Dairy

Jonathan's been awake on and off today after yesterday's big operation.  We had a few scares where he became restless and wriggled around a bit, causing his saturations to drop.  One of the bigger scares happened early while we weren't there - he'd managed to dislodge the ventilator tube from where it should be, so they had to re-intubate him again, but this time through the mouth.  The mouth isn't the most comfortable place to have a tube going in, and it also means he can't suck on his dummy, so we're hoping he'll be taken off the ventilator in the next couple of days.

But, apart from that, he's been quite a relaxed baby and actually slept through most of the day.

His belly's a little swollen after the operation, but the doctors don't think it's a cause for concern right now.  A swollen belly can often happen after such a long operation, so they're going to wait and see if it goes down on its own.  His gut isn't working quite yet, but we're told it should kick in over the next few days, and once that happens, they can think about feeding him again.  He's been without food for quite a few week's now, we hope he hasn't forgotten how to eat!

On the whole though, the doctors are happy with how he looks today considering he had such a big operation yesterday.

Apart from his operation, he's been spoiled with a whole bunch of books lately, some from his Uncle Dawson and others from his grand-parents who are visiting right now.  One of the books he got was Hairy Maclary from Donaldson's Dairy which we read to him today ... he didn't seem to pay much attention, but we enjoyed it!

Oh, and just in case you're wondering about the little love-heart on the middle of his hat - it's not a fashion statement, it's just something the nurses stuck on so they know where the middle of his hat is.  Because his hat keeps the breathing tube in, it's important that the hat's on properly, with the middle where it should be ...

5cm less bowel

Jonathan underwent a marathon 7 hours worth of surgery today, and emerged with 5cm less bowel and in what appears to be a fairly stable state.

The surgeon found a kink in part of his gut, and they think it was caused by the way his scar healed from the last operation. When the kink was undone, they found his stoma turned a dusky colour, so they ended up having to remove the kinked part of his gut altogether.

He hasn't collected another scar as a result of this operation because they reopened the exact same scar that was created last time - all very tidy!

At the moment he seems quite relaxed, and his parents are able to breathe a sigh of relief given this operation seems to have been successful ...

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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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