cardiac catheter (and the wiggles)

The bone scan is all clear :)

Ethan was pretty good over the weekend and was admitted monday morning for the cardiac catheter. He had the usual pre op tests (echo, ecg, chest xray, blood cross match and fbe) before going under at 2pm. A catheter usually takes around 2 hours but after 4 hours a nurse came out to say things were fine but progressing slowly. Half an hour later, Ethan's cardiac doctor came out and said it took a while because they had been trying to balloon a narrow part of his pulmonary artery. He told us Ethan's pulmonary artery has grown well but there are sections closer to the lungs which are narrow and will have to be looked at with either more catheter procedures or surgery. There is restricted blood flow at the conduit also. He says things are pretty positive and heading in the right direction, but they need to get the blood flow to the lungs right before they can close his VSD.

All the information gathered from the catheter will be taken to the cardiac surgeons on monday for discussion and they will let us know what they decide soon. It is likely that cardiac surgery will be required early in the new year.

Ethan recovered slowly from the lengthy procedure, as he was pumped with more fluid and had extra contrast in his system. The contrast slows kidney function which stopped him weeing. An in/out catheter was given to get things going again, so discharge was wednesday morning.



Never a big fan of the ECG



He loves a sleep during an echo



Rode the bike between appts at the RCH





Waiting around with Bob and Scoop



Spaced out after the midazalam pre-med

For the moment, our next appointment is on the 4th of January with Ethan's onc doctor.

We were lucky to be offered 4 sets of tickets to the Wiggles Christmas show at Rod Laver Arena on thursday. Thanks to Peter Mac for the superbox seats and the Australian Cancer Institute.

post port removal

Ethans temperatures persisted. He had a horrible day on Tuesday. He was febrile all day which made him pretty miserable. He had become fairly snotty and had started vomiting. We found out that the CT was all clear, there was no signs of cancer. This was great news but I found it hard to be excited as he was so unwell.

The suture line from the port removal looks really clean and good. The surgeon cut away the horrible skin and put it back together nicely. The sutures can be removed on Monday.

Ethan had a bone scan this morning. This is the last post chemo test, for now anyway. I haven't heard anything yet but we are expecting good news.

He is still having the odd temperature and is vomiting a bit but nothing we can't deal with at home. So this afternoon we were discharged. Hopefully he gets better before the cardiac catheter on Monday.

goodbye port

As usual nothing goes to plan, well almost nothing.

Ethan developed a temperature yesterday. The port site was looking worse, there was a hole in his chest and the port disc was trying to remove itself! We were admitted for antibiotics and a surgical review today.



The port site- with black disc visible!


The surgical team came and decided the port needed to be removed before it fell out. This was originally booked for Tuesday with his post chemo scans. The doctors didn't want him having two anaesthetics so were busy organising it to be done under the one anaesthetic today. This was the part that went to plan. He went to theatre and while he was still under GA was transferred to CT and then transferred back to recovery. He took a while to wake up, but was happy playing and walking around later today.


On Saturday went we enjoyed our first Challenge Christmas Party. It was huge, they had rides, lots of food, animals, Santa and more rides. The kids had a ball.



Adele and Ethan flying the plane



Erin had to go on the Ferris Wheel



Ready, Set, Go!



It's a long way down...



but I'll have a go!





Stay off the road with this one driving!

good progress

Ethan had his oncology review on Tuesday. Everything is going well. He has stopped vomiting and is tolerating the nasofeeds well. He is even starting to eat a little on his own. His blood counts have also picked up. The only negative is the port site. It has opened up more and you can see the disc.

He will be admitted on Monday afternoon. The post chemo tests and the removal of the port will take place on Tuesday. Fingers crossed.

The following Monday he will be admitted at the kids for the cardiac catheter. After this he shouldn't need any more hospital admissions until the new year.