James' Journey

James' journey through Heart Surgury and beyond

One Week Later

So, it's been a week since we left the hospital. James is going really well. If you didn't know that he'd had surgery less than two weeks ago, you'd never guess it unless you saw the scar. He's not on any pain medication, not even Panadol. It's truly amazing how little kids recover. The scar is... Read more

We're going home

First thing this morning, the nurses removed James' central line (large IV into his neck) which let him without any wall plugs. It was brilliant. The little guy was in a good mood having come off the Fentanyl (a morphine line pain killer) and no longer puking everything we put into him and he was not mobile again. We did some little walks and some... Read more


  As a part of most open heart surgery, Pacing Wires are inserted into the chest cavity when they are completing the procedure. This lets them attach a pace maker if required (if the heart develops an irregular rhythm. Thankfully in most cases they don't need them, but it's a good precaution. Once the staff are... Read more

On the Ward

James was a really tired boy again today, slept quite a bit and was a bit grumpy (can't blame him for that though). We did have a bit of fun in the afternoon though. The Nurse gave him some Medazolam. Basically, it zonks them out and makes them forget (although it can sometimes make kids a... Read more

Out of ICU

James moved out of ICU on Friday. We where pretty happy, only 24 hours in Intensive Care after major heart surgery.  I stayed with James last night and he had a pretty good night. He did manage to pull both of his drainage tubes off when he rolled over, but luckly the nurse was right beside... Read more

Heart Surgery take 2

  So today was the big day. After 5 cancellations, we got the call at 11am that the surgery was going ahead and to come in as soon as we could. A quick admission later, James was taken straight off by the Anaesthetist for preparation and then a long wait while the surgeon went ahead with... Read more


Unfortunately after the Pre Admission last week, we had the surgery bumped again. It's gone from Friday to Monday to Wednesday. Now James has gotten a cold so we've had to let the hospital know and that's postponed it again. It now looks like the 17th of December for the surgery, assuming that he's gotten over... Read more

Going Back Again

Over the last 6 months or so, James' heart problems have become a little more serious again. He has a <A title="Subaortic Stenosis" href="http://www.rch.org.au/cardiology/health-info.cfm?doc_id=3535" target=_blank mce_href="http://www.rch.org.au/cardiology/health-info.cfm?doc_id=3535">Subaortic Stenosis that needs to be repaired sooner rather than later. At the moment we are looking at next Monday for the Surgury, we have pre-admission tomorrow (Wednesday) so we can... Read more

Definitely a boy

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.<p />While... Read more

Homeward Bound

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... Read more

All Night Long

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... Read more

Shark Attack

<IMG style="WIDTH: 360px; HEIGHT: 480px" title="Shark Attack" alt="Shark Attack" src="http://www.oneroundpebble.com/photos/fblogphotos/images/13786/360x480.aspx" width=360 height=480 mce_src="/photos/fblogphotos/images/13786/360x480.aspx"> Just thought that you might like to see the wound that the shark attack has left [:P]   Read more

A Lazy Day, a tough evening

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... Read more

Off the Morph

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)<p />He also came off of the morphine. This time around there doesn’t seem to have been much of a come down which... Read more

A bit of Pain

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... Read more

A good night

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)<p />Once the doctor ok’s it they’ll let him wake up and... Read more

Out of Surgery

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.<p />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... Read more

Under the knife again

James went in for his surgery this morning. Next time we see him, he will no longer have a Gallbladder.<p />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).<p />All while the Anesthetist... Read more

A couple more photos

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   Read more

Surgury Date

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... Read more

Chubby Man

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... Read more

A good week

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... Read more

So much to tell you

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... Read more


We had our first proper laugh last night. It was only a little one, but it was for me! Not for Mum, but me. It was awesome! Overall James has had a really good week and has been pretty happy. I mean who wouldn't be with some many different people coming to see him. His Uncle... Read more

Roll over

Lyds got a bit of a fright yesterday. She lay James down on his lambs wool blanket and left him playing with some toys while she did a few dishes (the little guy goes through a lot of bottles every day). When Lyds came back a couple of minutes later, he was on his front having... Read more

The future

Thought I'd better write about what the plans are for this site. I'm going to try and put an update on what's happening with James every weekend (it'll probably be Sunday night before I remember) and if anything else that is news worthy happens during the week I'll put that up as well. That said, when... Read more

Merry Christmas

I know it's a little late, but just wanted to wish everyone a Merry Christmas and a safe and happy New Year. Thank you all for you well wishes and thoughts over the last couple of months. It has meant a lot to the three of us. Click here to have a look at some of... Read more

Off to the Doctors Again

<P class=MsoNormal style=”MARGIN: 0cm 0cm 0pt”><FONT face=Calibri size=3>We had another appointment at the hospital today. This one was with the surgeon who is looking at James’ liver problems.</FONT></P> <P class=MsoNormal style=”MARGIN: 0cm 0cm 0pt”><?xml:namespace prefix = o ns = “urn:schemas-microsoft-com:office:office” /><FONT face=Calibri size=3> </FONT></P> <P class=MsoNormal style=”MARGIN: 0cm 0cm 0pt”><FONT face=Calibri size=3>Lyds and James had a really... Read more

Who turned the volume up

Over the last couple of days James has become noticeably louder. Hopefully this means that his vocal cords are making a full recovery and he’ll have a normal voice when he starts speaking. In the interim, we want to turn the volume back down :-) We spent nearly two months hoping that the vocal cords would... Read more

Back Home

I made it back to Melton after a few days in Sydney. It was a really good feeling to be back home after so much time spent at Ronald MacDonald House. <p />James was tired, but seemed pretty happy to see his dad, I got lots of smiles we had some good cuddles (and some crying... Read more

Home James and don't spare the horses!

Lyds took the little guy off to the hospital for a checkup this morning and after the appointment, was told that she and James could go home! [:D] No more sitting around at Ronald MacDonald house or in the hospital for us. It's back home after two months away. The blood test he had yesterday showed... Read more


We had a pretty sleepless night, we are all getting used to each other again and we get weird little noises and cries from James in his sleep which we of course hear and wonder if everything is ok with the little guy.<p />That coupled with the drugs and feeds every few hours are making for... Read more

Half way home

We got to take James out of the hospital last night. [:D] For the next week or so, he'll be stay in at Ronald MacDonald house with us. It's not quite home, but it is still brilliant. We still don't have the results from any of the Gastro tests he had done (for the bowel), so don't... Read more

Colourful Crap

We had a poo with colour today. It's really bad that we are excited about it. Guess that it means we have been in hospital for too long.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /> We are hoping that this means the liver is able to expel the bile properly. We'll probably still need surgery, but... Read more

Lots of Smiles

I didn't want to go to work this morning as when I got over to the hospital to say good morning to James and see how he went overnight (I see him on my way to work each morning) I got lots of smiles. [:D] It was really cool. He saw me and instantly there where... Read more

Another Sunday

We had another quite Sunday. It's both good and bad. There are not too many Doctors around on the weekend and the only surgury is emergency, but it's still frustrating having to sit around waiting for news. We are still not sure when we might get the surgury, it could be day, weeks or months. James... Read more

Liver Test

We finished the liver tests this morning, but they didn't really find anything additional from the previous day, so we are still hoping that the drugs clear the blockage and we don't need surgery. Just have to wait and see. Unfortunately with all the tests, we end up with a tired and grumpy little guy who... Read more

Small step back

As part of the two steps forward, one step back hospital law, today was our step back. Looks like the little guys is having some problems with his Liver. He's started to look Jaundiced over the last couple of days and his poo has lost it's colour (which is really weird), so after a blood sample... Read more

A Quite Weekend

<Sorry this hasn't gone up earlier, have had a few problems posting to the site> We have had a pretty quiet weekend, not much to report.Saturday morning was immunisations, not too much fun for the little guys, particularly given they backed it up with a blood test a couple of hours later.Since then he's been a... Read more

Another Week

The Cardio Doctors are not really happy with how James' stridor (the Paralysed Vocal Cords) is progressing. It the main thing holding us back now. Because the Vocal Cords on the left are not moving, it means that the little guy is having problems with his feeding (it also makes his breathing sound dreadful at times).... Read more


Today we had a couple of really good feeds. We are limited to how much we are allowed to give the little guy in a single feed and we have been alternating between the feeding tube and orally. He did really well with the both the oral feeds, something that we haven't really had since before... Read more

No Tubes

I was a little surprised this morning when I got in, James had no Nasal Gastric tube (feed tube) sticking out his nose.<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /> Apparently after his feed overnight he decided to rip it out, just to let the staff see how cute he really is without all the attachments.... Read more

Sunday (16th) Update

We had a slightly better day today, James went back onto the drug again, just on a low dosage which made for an ok Sunday. It's a bit of a juggling act at the moment. Because he spent so much time in ICU he got serious adictions to a couple of drugs and now, if he... Read more


Sorry for missing a day, I didn’t have much of an update and was too tired to do it last night (and totally forgot this morning).   Friday was a boring day, no much happened, but the decision was made to start weaning James off of another of the pain relief drugs.   That has made... Read more

We like quite days

Another quite day with not much to report. Just what we like. Unfortunately James' throat still isn't much better. He doesn't really have a voice (but he does have a wicked snore) at the moment but it is slowly improving. We are hoping that as his throat gets a bit better he'll start to feed a... Read more

A quiet day

Not really much to report from today.   The stitches in James’ chest came out (the wound looks to have healed really well) and you had lots of hugs and cuddles.   James was a bit grumpy most of the afternoon but still travelling along ok.   We will hopefully have a few quiet days now... Read more

Going for a walk

Sorry I didn’t get this up earlier, fell asleep last night beside James’ bed rather than typing. While I was at work today James took Mum and Nanna for a walk. Given that all he wanted was a coffee scroll, he only took them down to the Cafe, but it was the first time he’d been... Read more

Big Boy Bed

Last night and this morning were not to much fun for the little guy but a few changes where made with have helped let James get off to sleep.   All the IV drugs where turned off, so no more Morphine which means no more Central line. As of tonight all we have left in is... Read more


Today wasn’t a good day for James. He finally started to suffer the comedown from the cocktail of drugs he’s been on.   He’s been suffering for most of the day which has meant a lot of crying and restlessness for the little guy. We can’t even pick him up easily to try and hug him.... Read more

Back on the Ward

When we got in this morning a few more of the lines had disappeared leaving just James and one main line connected along with a couple of monitoring leads for heart rate and the like.   It was great to see.   At lunchtime we where moved back up to the ward. It was unreal to... Read more

Breathing Easy

This morning the doctors took out the CPAP leaving James to breath on his own. We weren't sure if he'd be able to handle it first time around, but he took it in his stride, only waking up for a few minutes while the tape was taken off and then the tube removed before drifting straight... Read more

More Cuddles

Dad got his first cuddles today. And was he ever glad he waited a day. Lyds got about 45 minutes yesterday, I ended up having a bit over 2 hours with the little man.   The doctors have been weaning CPAP today with the hope of coming off tomorrow (he may not make it off the... Read more


We got our first cuddles this afternoon. In a major operation, nearly two hours in the planning, involving two nurses two parents and one child, Lyds got to hold James for the first time in two weeks.   We only got to hold James for about 45 minutes before he started to get grumpy, but it... Read more

Wide Awake

One of the drips that James has in stopped this morning so we have one less line for a couple of days.   Unfortunately the pain relief was going in via that line so we had a grumpy little guy for a while until the dosages got high enough through the other lines that are still... Read more

Closing the Chest

The Doctors decided to close James’ chest on Monday.   Once again we where kicked out of the room for a couple of hours but it was worth it. The little guy is starting to look like a bay rather than something from the Matrix (lots of wires sticking out everywhere).   The decision was make... Read more

Sunday Update

The daughter of one of our friends today asked her mum if she can visit James when he no longer has a broken heart.   If James keeps going like he is a the moment, that will hopefully be soon.   The Doctors and Nurses are happy with his progress, and hoping to close his chest... Read more

Saturday Update

Today was another step forward. We had an awake little man this morning. James finally got used to the seditives that have been used up till now. This meant that he was dosed up, but still trying to be awake. The Nurses and Doctors are all happy with where he's at right now, there is still... Read more


We where told this morning that it was likely that James would come off ECMO, but it depended on the surgery schedule and how James was going.   Given that, we spent most the morning in ICU waiting to find out if it was going to happen or not.   A bit after three o’clock, we... Read more

Quiet Day

Today has been a quiet day, the nurses have been changing the drugs that James in on trying to reduce the numbers and the amounts. He also started to get some food again. We are giving him 6ml an hour which although not much is a whole pile more than what he had yesterday. Hopefully tomorrow... Read more

Good day, Bad day

Today we where hoping to come of ECMO and start on the road out of ICU and eventually back home.   Unfortunately we didn’t get as far as we hoped.   The surgeon started by removing one of the two drainage lines running for James’ chest. This worked as hoped.   The next step was to... Read more

Tuesday Update

James had his first feed since surgery today.   He’s back to normal body temperature and they where reducing the muscle relaxing drugs until he started to wriggle to much.   The current plan for tomorrow is to slow down the ECMO machine and let James do all the work. The decision will be made in... Read more

Warming Up

Today was a pretty quiet day. The staff started to increase James' temperature, 1 degree every 6 hours. Watching them do this was sort of interesting. As the temperature changes, they have to juggle the dosage of all the drugs that the little guy is currently on. He has some drugs that help with the blood... Read more

The long road home

We spoke with a couple of the Nurses today about what lays in front of us on the road to getting James home.   They are happy with where we are now, he is doing some of this own pumping while the machine does most of the work.   They are going to look at starting... Read more

Saturday Night update

We just got back from seeing James, the have removed the excess blood from the Left Ventrical and are happy with how he’s going. Hopefully things will keep ticking along until Monday or Tuesday and then they’ll look at moving functions back to James. We are now hoping for a boring Sunday. Read more

Working Hard

Just got back from the Hospital, James is stable. He's still on the machine to do the work of his Heart and Lungs, and that is giving his heart a bit of a break to recover, however not all of the blood has drained from the Left Ventrical. This means that it's not resting very well.... Read more

A Chat with the Surgeon

I spoke with the surgeon just before we came home tonight. He was surprised that James had taken a turn for the worse (he was in theater for over 12 hours), but said this will hopefully be a small step back. He thinks that James’ heart just needs some time to recover after the surgery and... Read more

Not Good

Sir, your son has just had some heart failure. Not what you want the doctor to tell you. It was all really quick, his nurse said that one minute he was fine, the next minute it all started to go bad. Lyds and I decided to go down for lunch together and just as we where finishing up,... Read more

post Surgury

We eventually got the phone call last night. At about 9pm James made it to ICU (Intesive Care). The operation went as the surgeon had hoped. He patched the hole (a <A class="" title=VSD href="http://en.wikipedia.org/wiki/Ventricular_septal_defect" target=_blank mce_href="http://en.wikipedia.org/wiki/Ventricular_septal_defect">VSD), repaired the <A class="" title="Aortic Arch" href="http://en.wikipedia.org/wiki/Aortic_arch" target=_blank mce_href="http://en.wikipedia.org/wiki/Aortic_arch">Aortic Arch and completed an enlargement of the left ventricular outflow track... Read more


James is currently having surgury to fix his little heart. Basically, he has a hole in the heart, a narrow aorta and one of the Valves has a bit of a problem. The surgeon started at 2pm, hopefully we'll get a phonecall soon with an update on how the surgury went, for the moment, we are waiting.    Read more

Whats Happening

I've set this up to let everyone know how James is going with this Heart problems Read more

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