Saturday, October 31, 2009


Sorry it's taken a while to update.

South East Palliative Care have been great. Luke and I spoke to a counsellor, Lucy, in regards to telling the girls Ethan could die suddenly. Lucy gave us a lot of reassurance and offered loads of support with the plan she would visit the girls after we spoke to them. Telling the girls was not easy. Erin knew, upset but always knew. Adele cried and cried. She had no idea. She then went through the usual grieving processes. Anger being her main emotion. She bottled everything up and was bloody angry; hitting, kicking. So I was happy when Lucy spent some time with them. After Lucy had been, Adele started talking about Ethan to her teachers and friends. There were a couple of episodes where Adele was crying at school not wanting her brother to die. It was hard knowing she was so upset but at the same time it was good, as she was finally talking about it. The girls love having Lucy to talk to and are looking forward to her next visit. It's someone special for them. Lucy has also spoken to the teachers at the school. It's reassuring knowing the girls are in good hands.

Cherie the music therapist has also been a few times. The kids play instruments, sing, write songs, play games etc. They have a ball while expressing themselves and exploring their emotions. Ethan has a bit of a go before tiring to his room with a DVD and ear phones.

The nurses come out every 2 weeks. They take an assessment and just keep an eye on things. They are also funding some more oxygen. We were at the highest funding bracket the Children's Hospital could offer. With their help we now have a concentrator at school, a concentrator at home and 4 travel cylinders. He is needing the oxygen a lot more regularly and the supply doesn't last long.

Sharon the Southern Health nurse organised a respite package. We get 2 hours every Monday and Wednesday. I use this to take the girls to dancing and swimming. The funding runs out in 7 weeks so her program will fund an extra 2 weeks to see out the term. We will then need to apply for more funding from another company. We are on the wait list for a short term package from Windermere however this could take days, weeks, years. It is need based. I have a friend who's been on the wait list for 18months. Here's hoping we won't need to wait that long. The package from the Children's was declined. He's needs aren't severe enough.

The Doctor came out with all the paperwork as planned. We signed the not for resuscitations orders and treatment plans. She then distributed the plans to the Children's hospital and Southern Health, all of his doctors, the school and to the ambulance service. It is our job to tell anyone looking after him. Not an easy thing to discuss.

Ethan still has a lot of pain. He complains of leg pain and also chest pain. The chest pain is like a pounding. He cries and asks for his heart to stop. I tell him I'm grateful its still beating! He has regular panadol but this doesn't seem to do much. It's like he is having palpitations and abnormal rhythms. Sometimes it can happen a lot during the day and he'll end up falling asleep and other days it may not happen. Not to sure if he can start any other medication to help with this pain. We will be asking this at his next cardiac appointment. The pounding happens a lot on exertion. He is aware of this and has tried many times to use it to his advantage. He'll run until it happens so he can go home! It worked the first couple of times until we realised!
The last 6min walk test he managed 340m. Greater distance than before but this time he was buggered and sooked for the rest of the day. So overall I'd say he performed worse.

The palmtop is very useful but I must admit I get sick of hearing, "you're making me mad, I'm not a child" and "shut up, that sucks". It is broken this weekend and I am enjoying the peace!

He is lucky to have been away with School, Camp Quality and Very Special Kids.
He loved school camp. The teachers stayed up one night recording everything on his palmtop. It made it a lot easier to chat to Eth about his time away. The teachers and staff are amazing. His teacher Jennifer was Ethan's main support person. Poor Jennifer didn't want to hear her name again; ennifa, ENNIFA! He seems to be enjoying school more than ever and is finally interested in outer school activities with his friends. It's great to see.

Camp Quality took Adele and Ethan to Queenscliff for the weekend. Ethan's buddy David visited the week before to meet Ethan and to get to know him. Ethan was very excited. They packed a lot into the weekend. Ethan had a ball talking to them with his palmtop especially the freeway page all the way there and back. He told the driver exactly where to go and what exits to take. I forget who said it but all he needs for Christmas is a Navman!

Ethan has also had 2 days at Very Special Kids. It was Ethan's getting to know you stay. VSK deal with respite and end of life care. Ethan will start having regular trips to VSK for overnight respite. The next visit is 4 days in Dec/Jan. A lot of families from Glenallen use VSK. While he was staying there, 2 other kids from his school were there. He loved it. The school bus can pick them up and take them to school and drop them back off etc. It is set up very well.

A cute story from today,
Ethan: "When I grow up, I'm going to live in America".
Mum: "But I'd miss you"
Ethan: "Don't worry mum, I'd fly home and have coffee with you".
Mum: "Thanks mate, I'd like that"
Ethan: "Yeah, when I fly home to play football"


Fi said...

Thanks for the update, I know it's hard but we all really appreciate it. Can't wait to see the kids in a couple of weeks, and for them to be part of our wedding day. All my love, (Auntie!) Fi

Emma said...

Nice hearing about what is happening with Ethy - even though it may not be good news. Miss you all very much and hope I can make it back next year for a visit.
Emma xx