Thursday, April 29, 2010

Funeral Details

The funeral for Ethan will be held on Tuesday 4th May at 11:00am in Berwick at the Church of Christ at 446 Centre Road, followed by a burial at Harkaway Cemetery.

It is easy to get to from the M1 Freeway east of Melbourne. Take the C407 exit towards Cranbourne and then take the first right into Centre Road.

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Please do not send flowers. If you feel you would like to do something in lieu of flowers, please donate to Challenge. Challenge have been a huge support for us since 2004 with in hospital support for Ethan and also camps and other activities for all of the kids. It is OK to donate to any of the other charities we have linked to on the right side of the blog as well, they have all helped us and Ethan in some way.

Funeral details pending

Please don't call regarding funeral arrangements. When we know for sure, we will put the details here.


Luke and Jo

Wednesday, April 28, 2010

Farewell mate

The last few days have been up and down. Friday he was pretty bad and we warned the girls teachers that they will not be coming to school on Tuesday, but then on Saturday, he had a reasonably good day. He was up playing F1 on the PS3, he was eating, drinking and happy. Sunday morning he woke in pain and was only semi conscious. The Dr felt he was entering the terminal end of life stage, it was tough thinking we couldn't talk to him again. But then we noticed the pump had not been working again. He had a couple of breakthroughs to get back on track. With his pain under control, he was again sleeping peacefully. He woke for 1.5hrs and managed to eat some lasagne and play a bit more PS3.

On Monday, Ethan slept nearly the whole day apart from a few semi conscious conversations. That night though, he was awake and alert and telling us he wasn't sick. Yesterday, Ethan woke during the day and was very agitated about going to the toilet. He settled after a couple of breakthroughs and slept.

We went to bed last night with Ethan's breathing quite loud and fast, but every five breaths was broken by a long pause. On top of this, his breathing was gurgly and congested. How long could he keep this up for? He just seems to fight and fight.

A couple of hours later (at around 2:30am), Jo woke and couldn't hear him breathing. We both went to him and felt his head, it was cold, he wasn't breathing, he had gone.

We woke the girls and told them, explained what had happened and why he was cold. We cleaned him and dressed him. Adele made him a bracelet, and Erin put some momentos on his bed. We all said goodbye.

No more pain for you buddy.

RIP Ethan

Thursday, April 22, 2010


What's been going on you ask? Volcanic ash, a Maximum Security Prison incident, dodgy Rugby League team found out and Ethy Boy battling Cardiac Disease.

Mainly, it has been lots of sleep. Ethan has been clocking around 19 hours a day of sleep. The fever has come back somewhat and his chest is still full of secretions. As Ethan is sleeping in our room, it can be quite disconcerting to hear him breathing in the morning with a gurgling noise coming from his chest. We must put that concerned feeling aside and remember that he is actually comfortable and he is breathing steadily, it's just the 'noise' he is making that is making us uncomfortable.

With the lower half of his chest clogged with secretions, coughing is very important, but Ethan can't really cough like he used to. They are half coughs, that clear a bit of the gunk, but not enough. This will further compromise his oxygen deficiency. As a result of this congestion, the Dr has prescribed a new drug to add to his pump cocktail tomorrow, to help dry out the secretions.

We have had a couple of incidents where the pump was found to be not working. Ethan usually notifies us of severe leg pain when this happens, and we have to give him a break through to get on top of it quickly, or hit the button on the pump a few times to bolus some through. The worst incident was discovering at 11pm the pump hadn't been working for around 11 hours.

Apart from that, we are plugging along each day. We are eating food that has been generously cooked by friends/relatives, and like Ethan, have been stacking on the pounds :) I now only have about 12 square meters of lawn to mow thanks to the rest of it being poisoned. This has cut my lawn mowing time down from around 30mins to 40 secs. Excellent!

Saturday, April 17, 2010

Lots of sleep

Since Sunday, Ethan has been sleeping quite a lot, and when he has been awake, he has been sleepy. One day he pretty much slept through a whole 24hr period, only waking to go to the toilet.  Generally, he has still been going to bed at around 6pm, and waking at around 10-11am. He hasn't been quite as bad with the constant waking up at night to go to the toilet, so overall, we are getting more sleep as well.

The doctor came yesterday morning for a review. Feedback from the nurses were suggesting we need to lower the doses as we hadn't been giving any breakthrough doses and he has been extra sleepy. And initially, this was what the Dr was suggesting. Our take on this is that he was sleeping more because he was fighting whatever infection he had and also that his cardiac status has deteriorated further, so we were not keen to change anything.  Changing his meds now might mean he becomes more unsettled and agitated again while they work out the right balance.  We feel with him not being as agitated as he has been, and wanting more sleep, lets just leave things as they are for a bit.  And that is how it will be over the next few days.

The Dr is clearly concerned at the moment though, as he gave us his mobile and is updating the relevant parties of Ethan's current status. Ethan's chest is quite congested in the bottom half on both sides, and he is not clearing it properly, his temps have stopped happening now. With congested lungs, he has even less oxygen in his blood, causing extra tiredness, and therefore the longer sleeps.

Sunday, April 11, 2010

Infection continues

Friday night Ethan had a pretty decent sleep and slept through till about 11am, but his breathing was quite heavy and would stop for a short period every few breaths. His chest was also very gurgly. There is a lot of muck in there. When he was up, he was very agitated throughout the day and wanted people to be quiet. He did have a constructive period in the afternoon when he made his new volcano and painted it. But that was only a brief moment.

Saturday night was a bad one again. It started with Jo changing his site, which went pretty well. We discussed Jo's handiwork and he agreed she did a good job. After going to bed, he didn't settle and he wanted to get up to pee constantly. He woke early in the morning and was a walking zombie, continuing to try and pee every few mins. Jo gave him a few breakthroughs. This settled him down and he wasn't so angry, but he was still very tired, lethargic and overall very sick. He eventually nodded off at 3pm and has been asleep since. Hopefully he sleeps through and doesn't get up later tonight. His temp measured 38.8 earlier, so the bug is clearly still brewing.

Moving him around in this chair reminds me of an old movie I saw once. A family just tried to emulate that movie recently by trying to put a 'sleeping' relative on a flight home.

Friday, April 09, 2010


Ethan has had a hot couple of days. He developed a temperature overnight on Wednesday and they have continued regularly since. We are assuming it is from a chest infection as he has a pretty moist cough. The temperatures range in severity, with the hottest being 40.2. This has left him feeling pretty lethargic and miserable. He is definitely not eating as much and is less hyperactive. The effects of an infection or the cessation of dexamethasone or both?

A 'Care Chair' was delivered today. During Ethan's stay at VSK he loved resting in one, so VSK with the help of the Childrens Palliative Care Team organised and had one delivered today. The chair provides comfort and flexibility to kids who may spend a large part of their day sitting or lying down. He loves it.

Wednesday, April 07, 2010


Ethan had an enjoyable stay at VSK. He slept extremely well Saturday night and even had an afternoon sleep on Sunday. Sunday night was a different story. He was up all night, finally falling asleep at 6am despite the nurses giving break through medication. We picked up a very tired and lethargic boy on Monday. The nurses made comment that they thought he had deteriorated while he was there. They thought he was becoming more lethargic over time. If we weren't picking him up, they would have called us.

He does appear to be more lethargic. But this also seems to be a good thing. He is not as agitated and irritable. For example, when he wakes during the night, he goes back to sleep quickly and he doesn't seem to be jumping from thing to thing as much. These changes could be linked to the dexamethasone being ceased. The needle sites aren't lasting now. We have weighed up the pros and cons of dexamethasone and have decided to leave it out and jab him daily if need be.

The girls received their dreams on Sunday. A pink limo arrived at the house at 12:30 and completely shocked Ez. She wasn't too impressed with being surprised but once on the road, singing karaoke and eating pink lollies she was fine. Once we arrived at the Hilton Sth Wharf we were escorted to the restaurant where Adele's bike was waiting. After lunch we checked into our room. The views from the 19th floor are amazing. Little Dreamers organised a great day.

Saturday, April 03, 2010

No more dexa

Ethan is still waking every hour during the night. Sometimes for a brief period and sometimes not. This has taken its toll on me and I have been unwell for the last week.

In better news, Ethan is happier during the day. There are still periods of yelling, telling us to shut up and just being cranky, but overall his mood is better. He is still jumping from thing to thing and eating lots. There was a small amount of dexamethasone in the syringe driver which we removed just in case it was aiding the hyperactivity and over eating. It has now been over 24 hours, but he is still eating like a pig. Maybe it will take some time for the effects to wear off.

On Thursday, Ethan's school teachers Jennifer and Mary visited. Jennifer brought out the volcano science experiment for Ethan to do. Ethan enjoys their visits and we appreciate their help and support.

Today was Adele's birthday. A sad but happy day; this will be the last birthday Ethan will share with her. But even with this dark cloud over our heads we got on with the day and celebrated. Everyone had a great day.

This afternoon we took Ethan to VSK. So much has changed since his last admission it took 1.5 hours to handover. The next 2 days will be strange but it will be nice to get some sleep.