James has been going really well since we got him home. He's doing nearly all his normal stuff again. He's rolling around and as long as we are close by is pretty happy. Unfortunately a week in hospital with Mum or Dad beside the bed most of the time as made him a bit clingy.
While his insides are getting used to the new setup, James has been farting like a trooper. Totally normal given the surgery, but the cheeky smiles we get straight afterwards are definitely a boy thing :-)
Yesterday was a fairly long day. James wasn't quite himself. He was pretty grumpy. It was mainly down to food. We were working up to full feeds, but without the solids. This made him hungry most of the time. It was also time to try and stop a couple of the pain relief drugs (the ones they don't like people to take home) which didn't help his overall mood.
Our mood was definitely lightened when our nurse mentioned that they were considering sending us home if we could get the central line in James' neck out. Needless to say, we were pretty happy if we could get out early.
During the rounds this morning one of the doctors asked why James was still in the hospital. He said that given they weren't doing much for him anymore that he'd be better off at home. Not one to disagree, I asked for the discharge paperwork.
James heard the news and was about as happy as his parents and has spent most of the day smiling which a liberal amount of laughing as well.
James had a pretty rough night and morning, not sure if it was a reaction to the drugs or not enough drugs or just being hungry. One of the drugs that he is on sometimes can cause kids to get a little edgy.
He was getting short sleeps overnight before waking up crying. After a little bit of settling or a hit of drugs, he'd drop back off to sleep.
This morning he just wouldn't go to sleep. Not a chance. He wanted to but just couldn't seem to manage it.
At about 11 am he got his first feed since Thursday and also had the drain in his stomach removed. Not long later he finally dropped off to sleep. For 10 minutes. He's had a few more short sleeps since then but is still really tired.
The Surgeon came up to see him this afternoon. He is really happy with the progress that James has made over the weekend. Hopefully we can stay on track and make it home this week.
Just thought that you might like to see the wound that the shark attack has left 
James had a really good day today, he slept heaps, catching up on the sleep that he missed yesterday. He was pretty good when some of my family dropped in to wish him well, everyone was rapt with how well he's doing.
James also had a bit of a chat when his grandparents dropped in. He still doesn't know what to make of Granddads beard so he just stared for a while 
Unfortunately, this evening he really started to notice that he hasn't eaten anything since thursday. This has made getting him off to sleep pretty hard work. Hopefully Lyds doesn't have to bad a night tonight with him (she's sleeping in the pullout bed next to him while I'm in at Ronald McDonald house until we swap in the morning and she can have a sleep).
The Surgeon will hopefully come in the morning to see how he's going. If all is well, James should be aloud to start eating again not long after that.
James had an Interesting night. He pulled some more of his attachments out (the nasal tube this time) and tried to eat the drainage bottle (full of the gross stuff out of the stomach)
He also came off of the morphine. This time around there doesn't seem to have been much of a come down which is brilliant. The experience last year was not so nice so this is way better.
He is still unsettled, but is starting to roll onto his stomach already so is obviously not in too much pain. I know I wouldn't even let anyone touch me after only two days.
James has had a pretty average day today for pain. The pain management team recommended a few drugs, but getting the dose high enough without putting the little guy at risk has been a hard one of the nurses.
One of the drugs they had him on will normally keep any baby out cold. With James he was on the max dose they could give him and it was only keeping him out when there was no pain.
Late morning he was taken off the assisted breathing which was brilliant. He handled the transition without any issues or additional meds which was great. This meant that we could go to the ward if all was well after 4 hours.
Mid afternoon the nurse from the fourth floor came down and after doing a handover, we followed James up to 4 Main where we'll hopefully be spending the next week or so.
After a really restless day and the addition of a new drug to counter some of the adverse reactions to the morphine, James finally zonked out a bit after 6 tonight. Hopefully he'll get a good night sleep and feel a bit better in the morning so we can start the long road of reducing the Morphine.
James had a pretty good night last night. They decided to leave him on the Ventilator, so they still have him sedated, but he is fighting the drugs and waking himself up every once and a while (we think he just wants to see Mum)
Once the doctor ok's it they'll let him wake up and let him breathe for himself again. Hopefully sometime today. We'll see what happens.
The surgery all went well, nearly six hours. The surgeon came and spoke to us in Intensive Care and was very happy with how things went.
They are currently weaning James off the sedative so he should wake soon. When he does wake up, they will be able to take him off the ventilator so he can breathe for himself. We are still looking to go to the ward tomorrow, the main reason for going to Intensive care was his history as a cardiac patient.
James went in for his surgery this morning. Next time we see him, he will no longer have a Gallbladder.
The little guy was really good all morning, he didn't get too upset about having to fast (Lyds woke him at midnight to give him some food which made a huge difference).
All while the Anesthetist (make go sleep guy as Lyds says) and the surgeon where explaining what they where going to do James was reasonably content.
When it was time to say goodbye, one of the Anesthetists picked him up and James got the biggest smile on his face.
Weeks now have a four hour wait until James comes out, then a night in Intensive Care and a week on the ward before we can start thinking about going home.
We've been really bad with the camera recently, keep forgetting to get it out, so don't have too many good photos. Check out a couple of recent ones here
We went and saw the Gastro Surgeon last week to talk about the next round of surgery. He was pretty happy with how well James is going at the moment and has decided that the time is right to remove the Gallbladder.
For us, this is both good and bad news. We really don't want the little guy to undergo the surgery, but glad that it is finally going to happen after it hanging over our heads for so long. Hopefully we don't have an cancellations. Really not looking forward to that happening.
The current plan is for the surgery to take place on the 15th of May (Nanna's Birthday). James will be under for about 4 hours while the Gallbladder and Bilary Ducts are removed. The surgeon will then use some of the intestines to make new Bilary Ducts and stitch him back up.
James will have one night in the Intensive care ward before moving back to one of the wards for about a week before we can take him home.
The main reason that the surgery could be cancelled is the lack of beds in Intensive Care. Hopefully there aren't too many really sick kids around on the day.
We will do more posts on the blog while James is in Hospital so that you can keep up with where he's at.
Time for another one of my infrequent updates.
We have all been going really well. James is getting closer and closer to sleeping through the night (we keep waking up wondering when he's going to wake up though).
He's been stacking on the weight, last week he added another 220 grams (nearly a 100 grams more than we expect in a week). The doctors and the nurses in Melton are really happy with his progress and the Cardo doctor said that his heart function is about the same. He's now back on the weight curve that he started off on before the time in hospital.
He's able to roll off his back onto his side or tummy (when he wants) but is still struggling to get back off his tummy (although he is getting closer).
I was away for a couple of days with work this week, and when I got back last night, I got the biggest smiles. The Little Fish was really happy to see Dad again!
James had a pretty good week. He doesn't really like hot days, but with a little bit of Air Con, he's not too bad.
Lyd's had to take the little guy for some more blood tests, just to check up on his liver function.
He managed to put on about 400 grams (he was weighed just after a meal, so was probably more like 300 but that's still really good).
I've uploaded some more photos, you can check out the latest album here.
I always seem to start posts with an apology for not writing earlier. Hmmm. must try and post more frequently.
James is going great guns at the moment. He's been stacking on the weight and developing well. We get lots of laughs these days and he's starting to roll over more (not just by accident). The last couple of visits to the Cardo doctors have been positive and the heart function has been getting a little bit better (long way to go on that one yet).
James was meant to have his Gallbladder and bilary ducts removed on Friday, but the surgeon in consultation with the Cardo doctor decided that the surgery should be delayed for three months. The main reason is that James is still pretty small for his age (two months in hospital will do that to you). The surgeon normally waits for a healthy baby to be 6 months old before opening them up. Given his size, the surgeon would rather wait for a little bit longer.
We are pretty happy with this, James has made such great progress over the last two months since we got out of hospital, we where dreading having to watch him have to go through it again. As well as his weight, his muscle strength is still a bit behind so rolling and sitting are a little behind where they should be.