the last 6 weeks

So much has happened in the last 6 weeks.

A couple of days after Ethan was discharged he was having the odd fever and was very blue and lethargic. I tried to speak to the respiratory doc, paediatrician, and cardiologist but they were all out of the office. I tossed up the idea of calling the respiratory docs mobile number (which i had stored in my mobile from a previous occassion) I didn't want to harrass him on a day off but I needed to speak to someone so I called. The receptionist should have said he was over seas not out of the office. 3am his time he still managed to organise scans and follow up at monash for us. I felt bad but atleast we got results that his chest wasn't any worse and we could continue on at home.

We were lucky enough to be given tickets to the V8 supercars at Sandown. We were even luckier to see pit lane, the garage, sit in the car, see the truck and get some merchandise. It was just like the pixar movie cars. Ethan loved it. In Dr David's words, "He is such a petrol head!" This was followed with Ethan and Adele attending junior camp. They both had a ball with the many activities organised for them. Ethan loved telling us about the bus trip there, the bridges and the new roads he went on! It was good to see them happy after spending a couple of tiring weeks at monash. We would like to thank Challenge for providing us with these great experiences.

Ethan has also been very excited as Eastlink has opened. After watching it progress every day on the bus he finally got to go on it. He doesn't stop talking about it, looking at posters of it and watching a DVD about it. Glenallen organised the posters and DVD as he wouldn't stop talking about it at school. In news group he would announce how many days to the opening etc. Glenallen are also organising for him to go in the Eastlink patrol vehicle and command centre. He knows all of the bridges and off ramps, he especially loves the monash/eastlink interchange. He plays eastlink on the posters (some are laminated) and makes the bridges with his train tracks. We have threatened to take his posters off him when he is naughty, he soon behaves!

During the school holidays we went to Mt Baw Baw for 4 days. We have wanted to go in the past but I've always opted to holiday in the sunny places as Ethan doesn't tolerate being cold and he manages to look even bluer than usual. I rugged him up like an eskimo and off we went. It is the first time Ethan has been quiet in the car, he went from blue to green! Luckily he didn't vomit just felt car sick. It is the first family holiday we've been on where Ethan has not become acutely unwell. Amazing!! The kids had a ball. Ethan didn't like the wind or the snow hitting his face but loved playing in the fresh snow while the sun was out. He loved tobogganing on the gentle slope but wasn't a fan of the faster hill or crashing! Overall he had a good few days.

Medically Ethan has had a few appointments.
Oncology appointment went well. All scans are clear. Dr Peter is happy with his progress and doesn't believe the cancer will come back.
Radiation oncology appointment also went well. There are no signs that the radiation has caused growth issues within his spine, or problems with his bowel and bladder, and it hasn't caused any other tumurs, all good.
Respiratory appointment went as good as it could. Ethan was in fine form asking Dr David to give him 5, in the city, pinch your titty! He was also showing off with the homer dance and calling everyone losers especially the medical students! Ethan is now rotating between augmentin duo and keflex. We need to go back in 2 months if we are not admitted before this. We left with the usual goodbye; see you on the ward in a few weeks. While we were at the respiratory appointment we saw physio. Narelle had managed to secure herself the new vest device so she hooked him up and away it went. The vest fills with air and shakes his chest making physio a lot easier and less strenuous. It was great. Ethan was nervous about it but soon realised it was fine. During our next admission we will get to play with it a bit more and if it doesn't interfer with cardiac blood flow we will hopefully trial one at home.
Ethan also had his Cardiac appointment. He had the usual scans and discussions and as a result the sildenafil has been increased and will get increased again in a week. We are doing this at home without monitoring so it's been a little scarey. So far so good. He has also started on 2 diuretics to help ease some puffiness and ease pressure from his heart. These seem to be helping at the moment.

Photos to follow