Landscaping Project

Many of you may be aware of the 'The Hanley Family Project' group on Facebook. This group was set up and organised by some great friends and family as a surprise to have some much needed landscaping. As well as managing the Facebook group they continue to contact businesses, fund raise, and labour to help implement this plan.

We have had a few months of mud, slush, no fence and no dogs but we are now happy to report we have some landscaping to show all their hard work. Over the next few weeks we will hopefully continue to see results of their efforts. We are one step closer to trying to get some sort of routine and life as a family of 4.

We would like to thank everyone involved. We know there have been many ups and downs with fundraising and businesses etc but we are truly appreciative and we look forward to sharing our backyard with you all when it's finished.

The Hanley Family Project Facebook Group

Landscaping Photo's

Thank You

We would like to thank everyone for their support over the last 2 months. Thanks to everyone who donated to Challenge, and sent us cards etc. Ethan certainly touched the hearts of many.


Don't think of him as gone away-
His journey's just begun;
Life holds so many facets-
This earth is only one.

Just think of him as resting
From the sorrow and the tears
In a place of warmth and comfort
Where there are no days and years.

Think how he must be wishing
That we could know today,
How nothing but our sadness
Can really pass away.

And think of him as living
In the hearts of those he touched
For nothing loved is ever lost
And Ethan was loved so much.



Thanks for the ongoing support through this difficult time.

Slideshow tribute

This is the video slideshow we ran at the funeral service. It's not a perfect upload but it is pretty close to the original.

http://vimeo.com/11568987

Jennifer and Mary's words

Ethan's teachers gave a great tribute to him on Tuesday.

----

Jennifer
My name is Jennifer Healey and this is Mary Torpy. We have been Ethan’s teachers for a couple of years and have enjoyed the privilege of sharing in his education and in his life.

Mary
Ethan has been a student at Glenallen School in Glen Waverley since 2007. When Ethan first arrived at school, he was a little ball of energetic personality plus. Andrea Robertson taught him in his prep year and speaks fondly of his kindness and his gentleness. A particular friend was Erin and he would talk about his two Erins – one at home and one at school. He had an amazing relationship with the students and staff at Glenallen from Primary to Senior. His caring and loving nature came to the fore with students in wheelchairs and his boisterous energy was displayed when running around with his mates, driving the play cars in Grand Prix style or having light sabre battles. What we saw in this young man was a strong desire to communicate. He was a real people person with a highly developed sense of fun and humour. He always had something to say using words, signs, communication book or his favourite – his Palm top. He was so keen to communicate that he often devised his own signs and gestures. He also had a persistent way of getting information put on to his Palm top so that he could chat with others.

Jennifer
He often entertained the class with his communication device. “Go away”, “I’m not a child” and “shut up” would often be heard. Something I lived to regret was showing him how to say multiple words in one sentence with his Palm top, such as East Link, East Link, East Link, East Link, East Link …….. Jennifer, Mary, Jennifer, Mary, Jennifer, Mary ……….., Pizza, Pizza, Pizza...............

Ethan’s class mates had lots of words and thoughts to describe their friend. These included cheeky, forever entertaining others with his “bottom dance”, and bottom smacks, burping all the time, greeting people with a lovely “back tickle” or “head rub”, Essendon Footy Club, Yarragon Footy Club, sticking his tongue out and wiggling it at everyone and calling all and sundry either a “looser” or “crazy” when they did anything that was remotely funny. In the early years, it was all about Thomas the Tank, but this developed into Ben 10, Star Wars, Ben 10 and Kung Fu Panda. He was always The Crane. Throw in the other interests that all young boys have and Ethan was one of the gang.

Mary
Ethan had a skill of wiggling his way into our laps without us noticing he had even left his seat. All of the other students were very accepting of it. Ethan’s signature head rub differed between staff and his friends. The students’ heads were rubbed gently and kindly complete with eye contact and a soothing chat. In contrast, staff had their hair completely and firmly messed up with an accompanying “Ah ha”. In addition to a head rub, a bottom would be smacked. The adults were usually the lucky ones to receive this show of affection.

Ethan’s knowledge and understanding of technology was amazing and when the White Board was in use in classroom time, he was hooked. As long as his reading sessions involved the computer, it was OK. He loved using his PSP and he was enthused by Google Earth and Google Maps. Ethan learnt all the football songs from UTube and loved the footy banter and teasing when your team lost. When we studied Space last year, Ethan became a devotee. His room at home began to look like outer Space. Anything remotely associated with this topic kept his spirits high and engaged.

Jennifer
Transport, Eastlink and Freeways were another love. The way he could tell you the names of all the major freeways in Melbourne and how to get to them! He insisted every freeway and major road from the MS in Sydney to Eastlink in Melbourne was written in his book and recorded on his Palmtop. Ethan told me which roads and freeways I had to take to drive to Phillip Island. When Jo checked on his GPS, he was right!

Ethan gained a lot of pleasure from attending our two class camps. He slept in the “big boys” room and kept up with a very busy and tiring schedule. He devised his own expressions and signs for experiences and events such as the tractor train to Point Nepean, the tunnels and the Ferry to Queenscliff. All around the camp ground “enifa, enifa, enifa” was heard. Ethan was extremely good at twisting others around his little finger to do whatever he wanted. At Point Nepean, there were 100 steps that some of the students were climbing and of course Ethan wanted to go up. So up on my back goes Ethan and we climb. I then had to go back down and collect the wheelchair and drag it up the 100 steps. Ethan was quite pleased with himself.

Mary
You had to keep life upbeat and high. He wouldn’t be left out of anything. “No”, I don’t want to use the wheelchair in the P/E session, “No”, I don’t need any oxygen to get me through lunchtime, “No”, I want my wild turn like everyone else on the cars, “No”, I’ve rested long enough on the bean bags!

Ethan had a bottomless treasure trove, but with some definite favourites - his PSP, light sabre, DVD player, footy stuff and Ben 10. These treasures were regular features in his day. The problem was collecting them all at the end of the day!

His was a short life crowded with richness, with positive experiences that come from belonging to an active, loving and balanced family and from his involvement in a nurturing school programme. In his family, Ethan lived life to the fullest – camping, bike riding, bussing to school, school discos, being a member of a wide extended family, birthday parties, weddings – never missing out on anything.

Jennifer
Ethan’s love for his family was enormous. He would only write “love’ on a card if it was for his Mum, Dad, Erin or Adele. Everyone else got “from”. To see his face light up when Jo or Luke came to school or when showing Erin and Adele the racing cars and how to ride them fast (the only speed he knew) reflected the deep feelings he had for his family.
One of the students felt that if the tooth fairy granted us a wish, we could wish for wings
so we could fly to see him. But we can see him in our hearts, and our memories are all ones that make us smile.

We would like to thank you for entrusting Ethan to our care. It was an honour to be a part of his life. He wove his way into all our hearts and the hearts of many others. His presence will be greatly missed. Ethan’s signature was his bottom wiggle. This endearing dance will be held in the memories of many forever. Ethan taught us how to live and love life – Remember Him - Do a bottom dance and smile!

Jennifer and Mary

Eulogy

This is the eulogy that Jo and I delivered on Tuesday for Ethan

----

Luke
It was the beginning of January 2002 and we were expecting our 2nd child. Like all young couples we hadn't a care in the world, so with Jo 38 weeks pregnant, we set off camping on the New South Wales side of the Murray River. The biggest concern at the time was that if Jo went into labour, we'd have to float her across to the Victoria side to give birth. We didn't want a NSW baby!

Fortunately, there were no surprises camping and on January 16th 2002, Ethan James Hanley came into this world, quickly and with no fuss. Weighing in at a good 8lb 1oz and 51.5cm long, everything was great. The early days were spent feeding and changing nappies while running after a very active big sister, Erin, who was 19months.

Little did we know that our beautiful son had been dealt a bad hand. In August that year his little life changed. He was diagnosed with congenital cyanotic heart disease and the surgical plans were laid out in front of us. A series of 4 different procedures. The first of these operations took place 2 months later. The operation went for 13.5 hours and he suffered some post op complications. Ethan had to be reopened and drained and then he picked up a urine infection which subsequently led to a kidney reflux diagnosis. During this time we were informed Ethan had Di George Syndrome and to have genetic testing before we planned any more children. This is when we announced that we were already pregnant with number 3. We're not sure if the grandparents have gotten over this yet?!

Jo
In April 2003, Adele was born, a younger sister to boss around. 3 kids under 3, and the prospect of Ethan needing another operation. We needed a holiday, we managed to get to Cairns before Ethan's 2nd operation in October. This time no complications and in true Ethan spirit, he was out of ICU and up bouncing on the ward after a day. Truly amazing.

In May 2004, Cardiac wise, Eth was good. There was no signs he'd need surgery until he was at least 5-10 years old. Time to get on and live life. But then another blow. This time kidney cancer. Dr Peter Downie and Monash Medical Centre entered our lives. This is where we would call home for the next 7 months. Firstly Ethan had his kidney removed and then chemotherapy and radiotherapy followed. Ethan managed to get every side effect possible, our longest stay at home was 3 days but Eth didn't mind. He was amazingly strong and always happy. We learnt a lot from him during this time. Challenge also entered our lives at this point. Their constant support on the ward and to this day is truly appreciated. One of the biggest complications for Ethan was the loss of appetite. Already a petite little boy, a nasogastric tube was inserted. This didn't stop him. He would load up a girls pram with the bits and pieces and off he'd go.

Luke
Ethan was recovering well from cancer when he was dealt another blow. In August 2005, he was diagnosed with aspiration pneumonia and all drinks would now need to be made as thick as honey. This was hard at the start, we had to hide all liquid as Ethan would find them and start sculling. He was even caught scooping water out of the toilet bowl to get some fluid. He was very determined and stubborn, but like all of his treatments he soon learnt to accept and move on. Ethan was also showing more signs of cardiac trouble, he was bluer. This was the trend before all operations. At the end of 2006 we were told there's nothing else that could be done. He was too high a risk for a heart/lung transplant. He would eventually outgrow his heart and lungs. A fundraiser was organised and the money raised helped us spend some valuable time with Ethan, for this we are grateful.

In July 2007 we were given another scare. Ethan had began having seizures. This was due to lower oxygen levels. Things had deteriorated with his heart. It was hard seeing him struggle knowing there was nothing that could be done. In October that year, Ethan was offered a 3rd and final operation. A palliative procedure with high risks. If all went well it was going to prolong life and give us a bit of extra time. We grabbed it by the horns. This was another major operation that Ethan came through with no fuss. But, 6 months later, in April 2008, things were bad again. Ethan couldn't eat or walk. Another dark cloud loomed over us. We were given the option of starting a trial drug that potentially could make things worse. We had nothing to lose, Ethan was already struggling and the road ahead was dark. So Sildenafil was started. This gave Ethan a new lease on life. The effects it had were unbelievable. He went from not being able to walk to running. We knew this drug was a symptom manager and the underlying condition was still progressing, but we enjoyed every minute. We had our longest break from hospital admissions, 11 months. It wasn't until July 2009 that Ethan was back in hospital. This time he had started coughing blood. It would be from this point that Ethan's condition would fully take over our lives.

Jo
In amongst all these medical admissions and down periods we had many ups. Holidays were a major part of Ethan's life. They had to be strategically planned but we endeavoured to give our little family the greatest memories. These started with our first trip to Cairns. It would be on this holiday that Ethan would learn to walk. He saw his first test match and his love for cricket started. In February 2005, after cancer treatment, we loaded the car and headed in the direction of Pambula. We had no accommodation booked but we had to go, we needed a break. A lot of time was spent running around playgrounds and in animal parks. In May 2006, the Gold coast was calling. Challenge came to our aide and we had a great week in their holiday house. Ethan enjoyed Australia Zoo and the theme Parks. March 2007 saw us for the first time needing passports. Travel insurance for Ethan was minimal covering broken bones only, but this wouldn't stop us. The end of 2007 Ethan was granted a wish. He wished to sleep on a train. This meant a flight to Adelaide and the Indian Pacific train to Perth. This was a very exciting holiday based around Ethan and the things he loved. It was truly amazing to have such an experience as a family. In July 2008 we had our one and only snow trip. It was cold and wet and surprisingly the only holiday where Ethan didn't get some sort of fever and needed medical intervention! January 2009 we went to Merimbula. He hooned around the caravan Park on his bike non stop and went mountain biking for the first time. Camping at Easter in Gippsland with Nanny Heather and Poppy Syd was also thoroughly enjoyed for a couple of years. None of us will ever forget him darting out the tent after a couple of drops of rain, asking to go fishing.

Being sick enabled Ethan to be involved in many organisations. His favourites were Very Special Kids, Challenge and Camp Quality. Ethan went on many camps and outings with these groups. He always came back exhausted, but had a ball. We will always be thankful to them for helping Ethan live life to the fullest.

Luke
Ethan was a true boy. We often wonder if he didn't have all these problems, how much go he would have had. He was like a bull at a gate and therefore quite accident prone. During an admission at the Childrens hospital he didn't want to stay in the cot. Whilst outside the room, getting permission for an outing, we heard an almighty thud. Ethan was found picking himself up off the floor. He had managed to stand up and climb out! There's other stories of him being strapped into the high chair but managing to free himself and hit the deck. During chemo at Monash, he was jumping on the bed and fell. He landed on the IV pole and ended up needing his eyelid glued. He fell and split his head in the shower. He has had numerous black eyes and bruises. For 2 days we didn't know he had a broken arm. His pain threshold was amazingly high and we knew if he asked to go to hospital, something really was wrong. He was ambidextrous. He could bat left or right handed, ride a skateboard goofy or regular and kick a footy with both feet. This helped during treatment because no matter what arm he had a drip in, he could use the other one with out complaining.

Jo
In 2006 Ethan started kinder. He made lots of friends and it set him up for school, which he started the following year at Glenallen. It would be from here that his love of technology would bloom. Anything electronic, Ethan could do. He was a gun on the PS3 and could beat the best, well he was the best. He loved playing Spyro. He played it till the credits rolled. He loved computers. He could get himself around Google Earth with ease and he loved searching You Tube. He even demanded his train track set ups be videoed and uploaded. He was road mad and could direct using route numbers. He will be remembered for his love of Eastlink. He loved dragons, volcanoes and pirates. He loved learning about the Solar system at school and it wasn't long until this passion entered our home. He would bombard people over their favourite planet, bagging anyone who didn't know Pluto wasn't a planet! Ethan loved school and we loved knowing that once he left on the bus, everyone at Glenallen cared and loved him as much we did.

Luke
Over the years Ethan has had a passion for football. He could sing every AFL club's theme song. He changed teams a lot, but in the end Geelong and Essendon were his favourites. He always hung it on Hawthorn and Carlton supporters. We can still hear him saying 'Ha Ha' and losers about last Saturday's game. He also had a soft spot for Yarragon and his number 9 mate.

Ethan loved going to the movies and watching DVDs. Every school holidays Ethan would go to Village. He loved it. DVDs were always playing (if the PS3 and computers were off) He loved Cars, Toy Story, Finding Nemo, The Incredibles, Madagascar, Ice Age, Shrek, Kung Fu Panda and Star Wars. He would put them on and fast forward to the funny bits, much to the frustration of any one watching with him.

Ethan was very cheeky. He loved giving everyone a pat on the bottom and then giggling. Everyone will remember his bottom dance which started from his love of Homer. He loved the tricks 'give me 5, to the side', 'pull my finger', and 'Shh, don't tell mum'. Ethan was also very loving and caring and let people into his life with open arms. He loved animals and little kids. He had a terrific sense of humour and an infectious smile.

Jo
From July 2009, things changed. We had been planning an Around Australia trip but we had left our run too late. Ethan was too sick to travel. Things were on a downward spiral and we couldn't stop them. He had so much happening in his little body. He fought this off as much as possible but in February, he couldn't fight on with out help. He was in a lot of pain. We went to Monash and subsequently ended up back at home with a syringe driver and daily palliative care visits. Early on we had conversations in which Ethan admitted he was dying and told me to call people to visit. After he got the formalities of saying goodbye to everyone, he got on with fighting as hard as he could. As time passed, he told me he wasn't sick. When I reminded him of the early conversations he said he was better now and not to worry, 'I'm not sick'. Ethan was no hyperchondriac. He didn't like showing people he was sick. We've had many days where he would be blue and struggling and someone would see him and he'd sit up like Jackie and pretend all was good. He didn't want people fussing over him or treating him like a sick boy. This was his attitude to the end. Ethan peacefully passed away in his sleep on the 28th April.



The girls also courageously got up on stage and said the following

Adele
We miss you Ethan. You have been a great brother to us. It is sad to say goodbye.

Erin
Your bravery will not be forgotten
Love Erin and Adele

We will put up Ethan's school teachers words as well, very soon.

Post funeral gathering

Following the burial at Harkaway Cemetery, we invite you to gather at the Narre Warren Football Club Social Rooms for food and refreshments.

The map below gives directions from the Church in Berwick, to the cemetery in Hessel Rd, Harkaway, then to the footaball club rooms on Fox Rd, Narre Warren Nth.


View Directions to Fox Rd in a larger map

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.


View Larger Map

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.

www.challenge.org.au

Funeral details pending

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

Thanks

Luke and Jo

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

Secretions

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!

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.

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.

Fever

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.

VSK

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.

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.

a good day

The increase in medications seemed to do the trick. Monday night he bombed and slept great. He
was only up twice. The first was brief and the second included sitting in the ensuite for 30mins but overall we all got some much needed sleep.

On Tuesday Ethan was in a great mood. He was happy and in a good place. It was the best day he's had in a couple of months. It seemed the increase in medication had worked. He could focus and concentrate on tasks. He was happy with the girls and visitors. Tuesday night was a complete different story though. He didn't bomb with the night sedation and he was up more than 10 times during the night. A break through dose at 4:30 made him crash and he was only awake once between then and 8:30.

Today he has been cranky and sleep deprived. He was back to telling everyone to shut up and go away. After a long day he crashed with tonights sedation so fingers crossed it continues into the wee hours of the morning.

sleep deprived

The weekend was a shocker. Ethan was very agitated and cranky. I gave breakthrough after breakthrough but nothing calmed him. He just kept on going. I thought he would crash Saturday night but he didn't. The longest sleep he had was 2.5hours.

Sunday's nurse stayed for ages. She was unsure how she could help him or us. Many scenarios were thrown around between her, the doctor, Kristen and I. These included medication increases and changes, catheters and hospital/Very Special Kids admissions. Luke had taken the girls to a swim meet and I didn't want to make any major decisions with out him. In the end, we decided to increase the pump and be reviewed today.

No surprises, the increase in medication didn't really do anything. The review today resulted with another increase in pump medication and a big increase in night sedation. If this doesn't work, the Dr advised us to admit Ethan to Very Special Kids before Saturday to prevent carer burnout. He didn't think Ethan had urine retention, so a catheter wasn't inserted. So glad we didn't do that yesterday! The pump is now at Nozinan 20mg, Morphine 50mg, Midazolam 30mg and Dexamethasone .5mg. The night sedation includes doubling the Melatonin and increasing the Clonazepam by half. Hopefully this works and he can get some well needed sleep.

Today, Ethan has remained agitated and cranky with intermittent pain and is still eating non stop. He is a remorseless eating machine that will eat anything. He reminds me of Augustus Gloop. By morning tea time, he had eaten a full days worth of food. I never thought I'd see him eat like that.

fat guts

Ethan remains tired and continues to eat non stop. The increase in food with the side effects of the pump medication led to some serious constipation. He was having a lot of trouble sitting and pushing as he would fall asleep. An increase with the laxatives and 1L of prune juice has him running to the toilet every 5 mins, holding his bum yelling "poo poo"! It's actually very funny to watch. He's gone from one extreme to the other. Lucky Poppy Syd bought 50,000 rolls of toilet paper!!

His abdomen is very swollen. It looks like he has a beer pot. The needle site needs to be changed more often as the extra abdominal pressure blocks it. After the stuff up on Tuesday, I am now fully aware of the effects of this and can get on top of things early. The site itself isn't red, but the medication hasn't gone through. Once it is removed you can see the needle is flattened or bent from the pressure. Ethan still cries and gets upset with the needle site changes but today he thanked the nurse for helping him.

Ethan also has bad leg pain. His little legs are swollen and he has cankles. The added pressure in his legs as well as the extra couple of kilograms he is carrying is causing some horrific pain. Sometimes he just collapses to the floor holding them, but today he has started punching them and kicking his legs uncontrollably.

Ethan is more accepting of his condition now. When he first went into hospital he was very accepting, telling me he was sick and never going to get better. He made me ring people and tell them to come to the hospital as he was never going home. He then went through a stage of telling us he wasn't sick. He is now accepting of his condition again and is admitting he is very very sick. This is a tough thing to deal with. He can't speak with a counselor as they wouldn't understand him. Not that he would anyway. I have managed to have some pretty in depth conversations about death, dying, sleeping, heaven etc. No parent should ever have to go through that. It can really play with your head. I have had a lot of trouble keeping up to date socially as it seems everyone is either whining about nothing or bragging about life. It is tough to stay positive when everyone else is moving on and my life seems to be at its lowest point. But then I remember things could be worse.

I am looking forward to the next couple of weeks with the girls on school holidays but am also worried how they will manage seeing the ups and downs more often. We have had a lot of offers for sleep overs and play dates if the girls need to get out and about. They have also been invited to birthdays and have holiday activities planned but we need to be mindful they are not too far away or doing to much during their break. Our annual camping trip has been cancelled this year.

Challenge Visit

The cool people at Challenge came out to visit Ethan today with Baxter. Baxter is a dog Ethan has met numerous occaisons on Challenge camps. He asked to see Baxter and Challenge responded!

 

Ethan with Baxter, Sonia and Jamie

 

Ethan last November in Ballarat on the 'Cops and Kids Camp' run by Challenge

 

Ethan with Baxter in Ballarat

nozinan effect

Over the weekend we continued to play with medication doses. The pump has remained on Nozinan 12.5mg, Midazalom 20mg and Morphine 40mg since Sunday. This seems to be the right dosing. The change in medication hasn't improved things but we can now increase the pump doses as he deteriorates. He is still having the odd breakthrough and not settling well during the day. The last 24 hours have been even more difficult as he missed out on most of his medication due to the needle being bent, poor nursing skills with that needle insertion! The pump is checked regularly to make sure it is working however I must admit I have been slack. You can see the light flashing through the bag and hear it so I didn't take the syringe driver out, if I had I would have noticed the lack of movement. Lesson well and truly learnt. He has been a nightmare today but I know tomorrow will be better!

Our biggest issue is his fighting of sleep. He refuses to sleep during the day as he's 'not a baby'. He is a walking zombie. He eats non stop to stay awake. He also has edema in his abdomen and it is very tight and full. It is the first time he has had a little pot belly and is heavy to pick up. The added pressure and volume in his abdomen is causing his breathing to be quite fast and shallow. He also has facial edema causing his face to be very full and tight and shiny in appearance.

He is that tired he falls over. I have caught him falling from the dining table and toilet. But there have been times we haven't been as lucky. He has had a few falls while walking. He fell walking into the toilet, luckily he didn't hit his head on the porceline on the way down! He is very stubborn and pig headed so will not let you help him.

The girls are exhausted. They are having issues with the amount of visitors. We have created a 'quiet space' which no one is allowed to go in. I have explained that Ethan and I are house bound, we have no contact with the outside world. The only communication and interaction we get is from visitors so visitors are welcome. But we need to be aware they are trying to keep a normal routine, learn new things and be kids. They are dealing with a lot and need to come home and relax. So far the 'quiet space' is working and most people are understanding of this.

Ethan did manage an outing yesterday. The 4th one since this all started. He went over to Glenallen for a friends birthday. It was a nice outing. We managed to draw it out to 40mins!

Some good friends are organising some landscaping for us. The details are being kept from us but a lady came today to talk to us about plans and get our input. They should get the detailed plans in a couple of weeks. We are on a need to know basis and I am starting to feel that most of you might already know about this.

The girls dreams are definitely going ahead. I realised the other day when a friend asked, I haven't mentioned what they wished for. Erin wanted a pink stretch limo ride with all of her friends to the Hilton for lunch; a girly day to share with her family and friends. Adele wanted a BMX. We are also staying at the Hilton for the night as an added extra. Little Dreamers are a new charity that grant young carers or siblings dreams. Little Dreamers Online

Ethan will go on his own holiday to VSK as he is now too sick for friends and family to mind. They are the best people to care for him at this stage with the added bonus he loves it. He is staying 2 nights but he cracked it at me today as he wants to stay 6 nights!

drowsiness

Over the last week Ethan's behavior has been much the same; wanting to watch a DVD, then 2 mins later wanting a PS3 game on, then wanting to go to the toilet, then wanting to lay down, then wanting to eat etc etc. To add to this he is still coughing blood and is physically exhausted. He is now a danger to himself. We can not let him do anything by himself in case he falls asleep and falls. This means sitting at the computer, dining table, on the toilet etc. I have already caught him falling off the toilet once. We had one day last week where he was that agitated he ended up with 6 different break through doses and was still up yelling with his eyes closed, when he did finally go to sleep for the night he was up 6 times. We don't know why this is but it is physically and emotionally exhausting.

We have had a few changes in medication to try and help. The Haloperidol was increased to 3mg at one stage. This calmed him a lot. He was no longer yelling, he was tranquil but still agitated and pacing around the house changing from thing to thing. The Haloperidol has since been ceased, the Midazolam has been decreased to 30mg (from 40mg) and a new drug, Nozinan, has been commenced. At the moment there is no real change in his behaviour or sleepiness. Over the weekend we are slowly increasing the Nozinan and hopefully decreasing the Midazolam some more. It is going to be a tough weekend trying to get the medications right. But we may never achieve this. While we are trying for the correct doses, his heart disease and cardiac failure is worsening, he is still coughing blood and therefore becoming anaemic, his kidneys and liver are under attack from all the medicine. It is a tough and vicious circle that can only end one way.

The girls are coping extremely well considering what is happening. I am always amazed at their strength and ability to function. They are carry a huge weight on their shoulders but just suck it up and get on with it. They will get their dreams soon so that will be exciting for them and us. I haven't told them, I am trying to keep it a surprise. They are gorgeous girls that deserve so much more.

Satdy

Overall, friday night was a pretty good night, Ethan got up a couple of times for the toilet, but otherwise slept. He was up at around 9am this morning and in a decent mood for most of the morning, he even chatted to the SEPC Nurse instead of telling her to piss off. But as the day wore on, Ethan started going a bit crazy, wanting to watch a DVD, then 2 mins later wanting a PS3 game on, then wanting to go to the toilet, then wanting to lay down, then wanting to eat etc etc. This cycle continued until he started coughing up blood again and then collapsing on the ground because his legs had given way.

He was a struggle to deal with. At one point he was trying to cough up the blood in his chest, but seemed unable to, his eyes rolled back into his head, but then he eventually did a big cough. His chest still sounded gurgly. It was basically a repeat of yesterday afternoon.

Even though he was totally knackered, had extra morphine and midaz on board, he was still fighting going to sleep after this. We ended up darkening the room, telling him it was night time and sending him to bed. And he did finally go to sleep at about 6pm. Phew!

Not looking good for tomorrow, if this pattern continues, but no-one said this was going to be easy.

leg trouble

The haloperidol was increased to 1mg yesterday. This seemed to take the edge off the mood swings. He seemed more content between the ups and downs. Things seemed to be better but then today happened.

The nurses came and they noted he was more settled. They came with a drug order in case Ethan has a catastrophic bleed. We have this drawn up ready to go just in case. It's a horrible scenario and I'm hoping it doesn't happen. The nurses had barely closed the door when things went pear shaped. He lost the ability to use his right leg. He was staggering in circles and crawling on the floor. When he did have the ability to walk his leg would give way and he'd end up the floor. This happened several times this afternoon. He then started having trouble going to the toilet. He was getting very agitated and angry. During all of toilet visits he started coughing blood. I'm not too sure what happened next but he seemed to forget how to cough, swallow and smile. He had a mouthful of blood which I had to scoop out. He sounded horrible. I wasn't sure what to do, what medications to give etc. I made a few phone calls to the palliative care team who were supportive. We finally got on top of things and he is now fast asleep. I wish and hope nothing like this will ever happen again but chances are they will.

I'm hoping all the extra medicine will help him sleep all night but I have this feeling he'll need to go to the toilet.

dexamethasone

The doctors came out to the house yesterday to review Ethan. It was decided to keep all dosages the same. I'm not too sure how effective the haloperidol is. He seemed a bit happier yesterday but he also had a really good sleep the night before. He still had episodes of yelling and screaming but got over them quicker. I am hoping this is the effect of the new medicine and today will only get better.

He is still spending his days watching DVD's. He likes to forward them to the funny bits and then rewind them to the funny bits. Finding Nemo was played backwards yesterday. He demands someone sit with him while he does this until Uncle Colin gets home and then it's his turn until bed time.

He is still coughing blood. These coughing fits are happening more often. There is nothing we can do other than sit and comfort him and hope the next cough doesn't produce a massive amount of blood. There was some talk about changing antibiotics as infection can cause him to cough blood, but with no other signs or symptoms this seems very unlikely. The most likely cause, and the one we believe to be true, is that the increased pressure in his pulmonary artery is causing the blood vessels in his lungs to burst. We have dark towels strategically placed around the house so that when blood does splatter out it doesn't scare him or the girls. Blood on white stuff always looks like more than it is.

The needle sites were lasting a week but now we are lucky to get 2 days from them. We are trialling a small amount of dexamethasone inserted into the cannula to see if this will prolong the site. This works well with the elderly but the doses aren't as high. Fingers crossed this works. Changing the needle is horrible. He gets so worked up during it, putting a lot of pressure on his heart.

The girls have their moments. Sometimes good, sometimes bad. We have had a counselor come and visit them. They liked her visit but she didn't get much from them. They both expressed trouble talking with friends. The last time Lucy came the girls were very open. She is coming back again so I'm hoping it will be more productive next time.

haloperidol

Ethan had the Dr review at Monash as planned. After many discussions between 4 different units, it was decided to keep the morphine and midazolam at the current dosage and add haloperidol. This wasn't a decision taken lightly as haloperidol has major cardiac effects. It has been commenced at a low dose and can be increased if needed. Yesterday afternoon was again very trying and he required breakthrough medicine last night but he has since slept very well for him. It'll be interesting how today goes.

We have had a lot of people ask us whether he is in hospital or home. We have decided to nurse him at home until he passes away. If we wanted him in hospital we would still be there from our admission in January. Any review at Monash is just that, a review and home again. It is easier going to Monash instead of the GP and paediatrician etc as it gets done in one go rather than the running around between doctors and the chemist and then waiting on nurses to come etc.

haemoptysis

Ethan was awake all day yesterday. He was exhausted and his behaviour was all over the place. He yells and screams and wants you to sit with him one minute and then he's telling you to bugger off the next. He gets very angry and slams doors and throws things. It was a long afternoon. I was hoping he would have a good sleep and sleep most of the morning but he was up a few times and he woke early this morning.

By lunch time the same pattern of behaviour had started. It was horrible. Uncle Colin was flying back and I stupidly offered for him to go to the airport. He said yes and about 5 minutes later I was regretting opening my mouth. We loaded the car and set on our way. A minute into the trip I was going to turn around and take him home. He was confused and crying but it seemed he would fall asleep. He fell asleep 10mins into the trip. Finally he could get some rest but 2mins later he was wide awake. When we got home he spent 3 hours yelling at me. Telling me he hates me, that I'm stupid, go away, come here etc. I'm not too sure what they can do for this but something has to be done or we'll all end up at a loony bin. He has had 3 extra midaz break throughs this arvo and he was still up yelling at me. I was pulling my hair out. He has also had a major coughing fit this evening and is now coughing small amounts of blood. Lets hope this doesn't get worse. He finally fell asleep exhausted at about 7:30.

I paged the palliative care nurses. After discussing the issues with the Dr, we have a plan. Hopefully Ethan has a settled night and we will go to Monash tomorrow morning for a review and a change in pump medication. If he is unsettled we are to give morphine and midaz. Hopefully that will get on top of things until the morning. If not we will be going to Monash overnight.

Hopefully this upcoming review will get on top of things. I'm not to sure how long I can keep going like this. It is taking it's toll on all of us.

Still fighting

Over the last couple of days Ethan has been extremely restless and agitated. The pump has been increased to 40mg of midazolam to help ease this. (The morphine has remained the same). These doses are extremely high, especially when you add the break through doses. A lot of adults don't handle these levels but Ethan is still up fighting. His strength is amazing. He was awake a lot last night. I couldn't believe it, after a total of 50mg of Midazolam he wanted to play. I didn't appreciate the car and tractor noises on the side of the bed! He was then up to the toilet constantly. When he finally got to sleep, I thought he would sleep all morning but he was up early. By lunch however he was completely buggered and has rested and slept the day away.

We are now on top of his toileting trouble but he has developed fluid retention. His abdomen and torso are very tight and his little ankles and wrists are showing signs of swelling. His diuretics have been increased to help ease some of this pressure but it hasn't helped.

Toilet Trouble

Ethan had the needle site changed yesterday. This is now positioned in his right arm. He has had a few changes since the syringe started. His stomach has big red inflamed lumps and so it has been moved to his arm. Originally they were lasting a week but now with the increase in meds they are only lasting a couple of days. The pump is now at 50mg morphine with 7mg breakthroughs and 27mg midazolam with 5mg breakthroughs.

He slept a lot yesterday and when he was awake he was irritable and very demanding. He jumps from thing to thing and can't focus. Lucky for us we had a few visitors to help sit with him. This is the trend with all awake time now. This plays havoc on the girls.

Toilet time is now a big issue. He can spend hours trying to wee and can't poo. Morphine causes urine retention. He can spend hours in the ensuite trying to wee. He can no longer stand for long periods so ends up sitting, but then falls asleep. We have tried everything. Luckily for us he has always managed to go before a catheter is needed. We hope this continues. Morphine also causes constipation. Ethan has had a lot of trouble with this as well. When he finally gets the urge to go he pushes until he falls asleep. Lastnight I spent hours in the bathroom waking him up, telling him to push. I think at one stage we were both asleep in the ensuite! It was a shocker of a night based around trying to wee and poo.

Today Eth's class come for a visit on the bus. Ethan was excited. He even got on the bus and went to the Rocket Park with them. I drove behind just in case. He lasted 35-45 mins before he was completely buggered and had to come home. He had a ball with his friends but we paid for it for the rest of the day. He was a very angry and upset for the remainder of the day.

Pix

 

 

 

Sleepy

Ethan didn't have a great day yesterday (Sun). He was irritable and cranky. He required 3 breakthroughs, so the SEPC Nurse increased the syringe driver to 50mg of Morphine today. Midaz was kept the same. The breakthrough doses have been increased to 7mg.

He has slept all day so far and this may continue for a couple of days so he can catch up on lost sleep.

Hopefully we can again get on top of his pain.

Uncle Colin

Uncle Colin arrived on Thursday night. Ethan had been asking for him to fly home for a couple of weeks. He was so excited so even though Colin wasn't getting to Narre until about 11pm, Ethan forced himself to stay awake. He managed to mumble a hello and then fell asleep. Friday morning he was up and showing off. I hadn't seen Eth put on such a show for a long time. It was great to see.

We had the nurses and Dr come out to the house yesterday because he had required a few break throughs and is now sweating a lot. They decided to increase the syringe driver and commence antibiotics. The morphine was increased by 10mg and the midazolam by 4mg. This is the biggest increase so far. He was also commenced on a treatment dose of antibiotics just in case he is brewing an infection.

I don't know if it was the hike in medicine or just having Uncle Col here but yesterday was a happier day. He still hit the wall and needed a huge day sleep and there were some teary episodes but overall his wake periods were brighter and cheekier. He even had some time to play with his 2 little friends.

I would like to say a special thanks to Sal and Paula. I knew I had every right to be suspicious about your lunch visit. Even though I was laughing at Poppy Syd the pampering was very relaxing. Thank you.

Pain

The last 2 days have been horrible. Ethan has been very irritable, confused, and in constant pain. This deterioration lead to a morphine increase. The pump dose was increased by 8mg and the break through doses increased by 2mg. The pain remains constant despite this. We still have little window periods of happy moments. He chuckles at the funny sections in movies and gets carried away licking people like 'Stevie' in Madagascar 2. But overall he remains irritable, confused and in constant pain. He is also sleeping more. He is waking later and sleeping during the day. Getting around the house is more of an effort. He struggles with energy.

The girls have their moments. Erin is carrying a lot on her shoulders. She speaks openly about what is happening to Ethan with her friends, teachers and us. She is lucky that her friends have grown up around us and know Ethan and our situation. They are at an age where they can be empathetic. Adele however is having a lot of trouble with her friends and communicating to them. "They don't understand, they don't love Ethan, they don't care". It's very hard. Her teacher is very aware of the situation and is a great support. She is dealing with a lot more than most 6 year olds. She has been through so much that sometimes I forget she is only 6. Both girls have had to grow up fast.

Photos still to come. Have had trouble uploading them. Ethan doesn't like his photo being taken anymore so there's only a few.

Headaches

I never got around to putting the photos up, Sorry.

We have had a few big days. We said goodbye to Aunty Em on Saturday. It was great spending time together even under such awful circumstances. To make a positive from something negative, Emma and I have a stronger bond now and for that I am greatful. Erin and Adele were very emotional. They loved Aunty Em being here. Erin was visibly upset when Emma was leaving but Adele, the little tough nut held it together until the car drove off. She then howled. It was hard seeing them so upset but pleasing at the same time; Emma's trip did exactly what we wanted it too. Ethan was fine saying goodbye but he has been asking for her a lot since and he gets upset when I say she's in London. Apparently he hates London! I should have told him she was in New York because he's catching the boat there tomorrow!!!!

Ethan has still been getting bad headaches. It is very hard to control and he becomes quite agitated with them after a while. The lack of oxygen causing them is also leading to major confusion and irrational conversations. He then becomes more agitated because you don't understand him. He is also getting intermittent chest pain. The pump has been increased and I am guessing it will be increased again over the next couple of days as the pain is becoming a bigger issue.

I was talking to the girls tonight in detail about the disease progression and what and how things could happen. Erin said, "If we know he's going to die and he's in pain, why can't we drug him so it doesn't go on causing pain?" I then explained only vets can do that. She has strong views for a 9 year old.

The respite worker, Amy, who we met before Ethan deteriorated came on Monday night. She isn't qualified to give the medicines but Ethan formed an instant bond with her and had asked for her so it was organised. She watched 10 mins of about 10 movies with Ethan while I pottered around cleaning and getting tea cooked for the swimmers. It was good doing the things I normally do, but sad that housework could bring me joy!

The Childrens Palliative Care team are going to fund the air mattress and also a nurse to come out to the house a couple of nights a week so I can get out and be with the girls. I'm not too sure how long this will take to get up and running but we are looking forward to it.

School Visitors

It seems like forever ago that I updated the blog but it's only been 3 days.

Ethan was restless on Tuesday night. He was still sleeping but agitated and kicking his legs a lot. At one point he moved the pump and I heard a rattle. The syringe had come out of the driver and the tubing was disconnected. We don't know how long the pump was disconnected but after a few boluses he seemed happy again but it was the start to a long day. Wednesday was up and down. Happy one minute, in pain the next. A few break throughs were required however the pump remained at the same levels.

It is such a balancing act to keep him pain free and comfortable without causing drowsiness. At one point yesterday his speech was very hard to understand. I was having trouble translating for him. It was a very difficult and frustrating situation.

Ethan fills his day with DVD's and PS3. He demands someone to sit with him while watching DVD's and then he forwards to the funny bits. I don't think Aunty Em has seen a movie from start to end yet. I'm not too sure how I will cope with this after Em has gone back to England.

Today one of Ethan's school bus drivers and supervisor came as well as his current teachers. He loved it. They all brought goodies which have been a real hit. We spent sometime this afternoon completing a solar system puzzle and reading a Cars book. Thanks guys. He is tired now but it is worth seeing him so happy even if it is for a little bit.

I will try and put some photos on later.

Syringe Driver Control

After the bad day on Saturday the syringe driver medications were upped. A huge improvement. He was happier and not as agitated during the day. It was nice to see some usual Ethan antics shine through. We weren't so lucky Sunday night. He was restless and agitated. Break through doses were required from about 4am. It was a long night but the medication worked and he was happy playing play station again in the morning. The syringe driver medications were increased again and the needle sited was changed. This combination seems to have done the trick with controlling the pain and agitation. He was a lot brighter and interactive yesterday. Fingers crossed he can hold off another deterioration and be comfortable like this for a while...

The girls are coping extremely well considering what is happening. Erin uses the avoidance technique a bit, using any excuse to get out of the house. She is a lot happier when Ethan is comfortable and not confused. They have a really strong bond so when Ethan is telling her to go away it is very heart breaking. She is talking about the past a lot and reminiscing. She is also questioning peoples behaviour. "Why are people doing this now when he's always been sick?!" She is very frustrated.

Adele is moody towards me but is otherwise nice as pie to everyone else. Having Aunty Em here is a good distraction. When Eth is not himself Adele follows Em like a little lost puppy but when Eth is happy she is there taking advantage of every window period of 'normal' Eth. She is a strong little girl.

The girls put in an application to Little Dreamers a while ago. Little Dreamers is a company that grants siblings or young carers dreams. We weren't too sure as to how long this would take or if their dreams would be accepted etc but it should go ahead. We will hopefully hear more by the end o the week. I haven't mentioned it the girls. Hopefully we can surprise them.

Hospital Pix

 

 

 

Confusion

Ethan has had a bad day today. He has been cranky and miserable and very confused all day. The break through injections have done nothing. It's been a long day...

Some examples of Ethan's confusion;

"Mum, I'm hungry. I wan't chips" You get them and he says "I'm not hungry, no, go away, I'm full"

"Hello Erin" and then when Erin says hi back. Ethan says, "Urgh, Don't speak to me"

"Mum, come here" You get there and he says, "Go away" waving his hand for you to piss off, so you start to go and he says "stay here, I'm hungry" and it starts all over again.

"I don't like you, you're mean. Mum, I love you"

It's doing my head in. I'm like a yo yo around him. I've accepted he has this shit heart condition and that he will deteriorate and die but why does he have to be a different boy in the process?!

The grandparents came down today. They bought goodies for the freezer and tidied up around the house. It is a huge improvement. Thanks heaps oldies.

Visitors

We are finally settling back into home life. Ethan is getting himself from place to place around the home and is a little independent at times however most of the time he is demanding and requiring one on one attention.

We are lucky to have had Aunty Fi come for a few days while we were in hospital and Aunty Em is here for a couple of weeks to help with the girls while we try and settle in. Both Aunts have been a huge support. Thanks girls.

I usually never stop, always out and about from one thing to another. Having Ethan home has changed this. I am now restricted to how far I can go and when I can go. Lucky for us we have had heaps of friends visit so this hasn't had a huge impact as yet. I know people are worried that it is causing me to be more tired, I won't lie it is but if you weren't coming I'd most likely be lying on the bed depressed, sooking and moaning that I have no friends that care. I'd much prefer to be tired at the end of the day after seeing my friends. I'd also like to thank everyone who has sent messages of support.

I have managed to get some general 'house keeping' stuff done. The nurses are coming daily to change the syringe but it is up to us to make sure we have all the medicines. We found out one of the injections is not covered with Ethan's health care card so I spent some time chasing a loop hole to get around this. Luckily for us, the oncology team will cover it. I have also had the oxygen machine serviced as it is getting a bit more use now. We've filled out centrelink forms, not an easy thing to do on the best of days but when your tired they are a lot worse. Poor Luke copped the anger of that. We are waiting on a referral within palliative care for the air mattress as funding on this only lasts 30 days. We have rearranged respite as we now need a qualified carer. The palliative care team can provide someone in business hours only, so Sharon our care nurse is looking into this. Our case manager is organising a lawn mower to come as well as some volunteers to help out if we need them.

Ethan slept from 7:30 last night until 12:30 today. He woke very puffy and swollen but was refreshed and had a good afternoon. He was sore and irritable at times but seemed to recover himself with no need for intervention. He has also managed some food today. Not as much as normal but a lot more then recent times. Tonight we had cousin Shane come (and Nanny Judy and cousin Tara) Ethan put on the cheeky boy act. He was showing off trying to do handstands, and dancing. It was very funny. He was still confused jumping from thing to thing but he was happy so it was bearable and quite funny. He did fall in a heap and have some break through but it was still good to see some spark. I can't remember the last time I saw such spark.

Overall he had a pretty good day and I feel I have achieved some things.

Coping at Home

It has only been a day since I updated this but so much has happened.

Yesterday before we came home, Ethan had an episode of acute confusion. He was angry, crying and throwing stuff. The nurses had to give him an injection to calm him down. It was horrible seeing a beautiful, loving boy be so angry.

Before leaving, I spoke with the doctors to make sure we had all bases covered at home, what medications to give and how much exactly. This again raised the question as to where we want be; at home, hospital or Very Special Kids. Technically Ethan could still be in hospital but we want him at home and hopefully we can keep him at home until he passes away. This decision will get reviewed every time something new arises.

Night one back home, I just wanted to sit on the couch and watch NCIS. In the small window period of working towards this, Ethan had a sudden pain episode. The Emergency medication box was opened and break through Morphine given. Ethan then stood on his tubing and pulled the site dressing off. I then had to change the dressing. Meanwhile, the air mattress that was delivered started alarming. I rang the 24 hour hotline to be told someone will call back. So in the back ground an alarm was continuously buzzing. The girls who are sleeping on the bunk beds started mucking around and annoying each other. Cute when looking back, Adele hanging her head over, or dangling her foot but late at night when your exhausted and they're yelling and screaming instead of sleeping, not good. I finally got to sit on the couch (the alarm still buzzing despite being completely unplugged), when Adele came down with a tooth that had fallen out. It was very hard to show happiness and build up the tooth fairy, when all I wanted to do is yell "get back to bed, FFS I've had enough".

The alarm for the bed went all night. It woke me several times. I looked at it again this morning and restarted it. The alarm stopped. About 20 mins after this the 24 hour service people got back to me. Apparently there is a silence button!!!

Ethan was up and down a bit during the night. At one stage he checked the morphine pump to make sure the light was flashing. He was happy and told me brightly, the lights blinking. As cute as it was, I was too tired to appreciate it.

Today has been up and down also. He had some great periods and some confused sick ones. The emergency drug box was again opened on more than one occasion. At one stage he was dry retching and blue, and struggling, I was trying to get syringes, needles and break open ampules while trying to hold Erin and comfort her because she was scared shitless. It was bloody hard to deal with. Adele mean while was on the couch reading to Aunty Em and had no idea it had even happened!

The palliative care team came out and our paediatrician popped in for a social chat. I think we have things moving in the right direction and I feel confident we can do this at home.

Home Time

The medications in the morphine pump were altered yesterday and 2 more drugs for nausea and pain were commenced. This combination seems to mask things for him as he was a lot happier. He had times of being cheeky and playing with his new Zurg. It is good to see and helps lighten the situation.

Ethan is still not eating and drinking. He looks very skinny and weak. Hopefully over the next few days with the new medicines he will start taking more orally, but I'm not holding my breath.

The urine retention is not an issue when there is nothing to wee! If he starts drinking more and this becomes an issue we have a few passive things to try like warm baths, but if things don't flow, he will need a catheter inserted.

The plan is to go home today and spend as much quality time with our little man before things deteriorate even more. We are taking a drug box home with 1st and 2nd line drugs in it to combat any issues that may arise.

Lego Zurg

Ethan having fun with his new Lego Zurg

Restless and irritable

Ethan has remained restless and irritable with some cheeky happy moments. The pain management could be better as he has required 5 oral doses of morphine in the last 24 hours. I am hoping this doesn't interfere with the plan to go home...

This morning Eth's line and needle site needed to be changed. He handled it better than I thought, but sadly it's because he doesn't have the energy to kick and scream. I decided not to put the numbing cream on his belly as this draws attention to what is about to happen and the anxiety associated with that is unbearable. No warning, straight in.

He is very clingy and needs to be close. He is sleeping that lightly that if I move he wakes. Last night I got up to go to the toilet and when I came back he was gone. He managed to get himself to the nurses desk looking for me. He was confused when he got there and couldn't explain why he was there. When he saw me he just sobbed.

Some changes have been made to the morphine infusion. Hopefully this will help reduce his irritability. We are waiting for the doctors to come and discuss the plan.

Weekend Update

Ethan had a slow start to yesterday. He needed some oral morphine in the morning and then slept until 1:30. Waking on and off briefly. The morphine helped and he had a happier afternoon.

Ethan is more sensitive to noise and light now. At one stage he kicked us out of the room for talking to loud! This was a good time to grab a drink and sit in the sun. But more importantly it is good to know that when he is tired and needing a break he will let us know.

Last night we had planned a dinner party with a few friends but as we were still in hospital the party was moved to the ward. Ethan loved it. His footy idol, Brighty, came in with Balloons and his 'cousins' came. He socialised in between resting and again he told us when he had had enough. He had a great night and it was well worth the organisation. Over night he slept solidly for a few hours but was mostly restless and irritable. He needed 2 doses of oral morphine which didn't seem to do a great deal.

The big issues from today are that Ethan is now having trouble weeing. This could be a side effect of the morphine. It took over an hour today to go. At the start it didn't seem to bother him but now he is starting to get annoyed. He has also been nauseated today and has vomited. Restlessness and irritability have also been big issues. Hopefully the main docs will have some answers on how to treat these best.

The plan is to still go home tomorrow with the palliative care team. Ethan is busting to get home. (and to school!). Don't think that will be happening but it's good to have hope. South East Palliative Care will monitor us closely in the home.

Thank you to all of Eth's visitors. Ethan is a very social boy and it keeps some 'normality' for him. I know it is hard for all especially when he is up and down, just like it is hard for us but know he is happy you are making the effort and we hope to see you at home soon..

Admission Photos

 

 

 

 

Uncertainty

Overall Ethan was a lot happier and more alert yesterday. He started the day in pain which led to the morphine infusion being increased. This increase seems to be the right dose to manage his pain as he is showing signs of his usual cheekiness; calling the doctors losers and smacking the nurses on the butt!

Ethan had a lot of visitors yesterday. He loved it. He was extremely exhausted last night sobbing to get to sleep but he had a great day. It was good to see him interacting and happy. Ethan is very social so even though he was exhausted at the end of the day he wouldn't want it any other way. If you want to visit please don't stay away because he is tired, he loves visitors, he always has and it is 'normal' for him.

We have had many people ask whether they should come to see him, they don't want to miss the chance to say goodbye etc. We can not answer this question. We don't know when Ethan will pass away. We have a lot of uncertainty about Ethan's future. This is a decision everyone has to make for themselves. If this is a thought that has entered your mind, here are some facts to think about..

We know Ethan has deteriorated. His cardiac function is under a lot of pressure and his body and main organs aren't getting adequate oxygen. He is getting chest pain because his heart isn't getting enough oxygen, headaches because his brain isn't getting enough oxygen. He could pass away suddenly from a seizure or heart attack. To add to this he has the extra demand of infection, will he cope better when the infection goes, maybe, maybe not. If yes, the disease is still progressing and we aren't in winter yet. Any infection could tip the balance.

He could potentially pass away with the next walk to the toilet or he could slowly start to deteriorate. He is sleeping more because his brain isn't getting enough oxygen, the window period of being alert and awake may slowly decrease. He may become more confused and disorientated. It could be a slow progression over the next few months. The answer is the doctors don't know, we don't know. He could pass away today, tomorrow, next week, next month, in 6 months, we don't know.

We do know life as he knew it has changed. He is in pain, sleeping more and showing signs of confusion. The ability to pick up and go has changed. He won't be going to school 5 days a week. We will be nursed at home under the supervision of the palliative care team. He is happy and cheeky when the pain is under control. This is an uncertain time for us all.

We spoke to the girls last night again. It was hard. No 6 or 9 year old should have to try and understand. It's hard enough for us adults. I'm continually amazed be their strength and insight. We are lucky to have 2 beautiful, bright girls.

Thanks for all the messages and support.

Chest Infection

After walking into the mess and pain of yesterday morning I decided to stay last night. In the evening he remained restless. No major pain but irritable and looking like he was going to vomit. He wasn't the 'normal' Eth. He finally fell asleep and remained restless, tossing and turning most of the night. We had a few problems with the morphine infusion during the night so he woke in pain needing more oral morphine. This seemed to settle him well but then he started vomiting. This took a lot out of him.

The doctors came to assess him a couple of times today. It was decided to take a chest x-ray as his chest was now noisy. The x-ray showed a small patch of infection in the right side of his lungs. Not a big deal in a healthy person but as he is so compromised it could be some source of his pain. He has been started on oral antibiotics for this. If he spikes a temperature we will have to have discussions about further treatment.

He slept on and off during the morning. He was interactive with his talking but not his happy playful self. He then had a good sleep and woke a bit more playful. He had about an hour of being cheeky before he became irritable and in pain again. He finally went back to sleep when his pain was under control; 2 doses of oral morphine. He has remained asleep since then.

We are not sure if he was starting to get an infection (which didn't show up in initial tests) and thats why he has deteriorated or if he is getting infections now because he is so compromised with his cardiac function. What comes first the chicken or the egg? The answer doesn't really matter, treatment is still the same.

I am still hoping tomorrow will be a better day...

Lack of O2

Yesterday when Jo and I got to the ward, Ethan had just woken up in extreme pain, crying and writhing over the bed. The nurses had been trying to give him an oral dose of morphine, but he wouldn't take it. Jo then forced him to take it. He continued to be agitated and unsettled until the morphine kicked in, then he fell asleep.

While asleep, we had a more constructive chat to his Cardiologist than previous ones. They tend to waffle on at a high level without letting go some of the details, so i think my frustration with them to the other doc's finally got them to give us the details we thought we wanted.

In summary, it's Ethan's lack of oxygen supply (hypoxia) that is giving him the most pain. He is having headaches, leg aches, chest pain, stomach pain and pain in other places that he doesn't even tell us about. Obviously, this is all due to the dodgy heart plumbing he was born with. The 3 open heart surgeries he had were to improve blood flow and oxygen delivery, which partly worked, but this led to Pulmonary Hypertension which is not recoverable from. The Sildenafil drug helped with the hypertension for a while, but the hypertension still progressed, and the benefit of Sildenafil wore off, even after increasing to the maximum acceptable level. So he is in the state he is in now.

We were wanting some way to track/plot his deterioration with tests that aren't too invasive, and the Cardiologist's said we can do whatever we think is necessary. The problem is, there is no point in doing them because they will not be able to obtain measurable differences. The best thing we could do is the 6 min walk test, but there is no way he could do that now.

So the focus has become pain control and trying to find the right balance so he is not out of it from pain or out of it from too much morphine.

When he woke around lunch time, he was quite sleepy and took a while to wake properly. During the afternoon, he never got to the cheeky moments he showed on Tuesday evening. We had a few visitors which were some distraction for him, but overall, he still seemed to be feeling the pain and wasn't his usual self.

heart disease progression

Ethan was excited about starting school. He had had a couple of months off so was ready to go back and see all his friends and teachers. Everything was ready; his lunch was made, bag was packed. But during the night he developed a temperature. I gave him some more panadol but it didn't seem to help. By the morning he was also in a lot of pain and his breathing was erratic. I decided to take him to Monash for IV antibiotics. I spoke to the Oncology team who admitted us into the Childrens Cancer Centre rather than waiting in emergency. They quickly did a chest xray to find his lungs showed no signs of pneumonia. This was not what I wanted to hear. He had chest pain, fever, fast breathing and coughing but his lungs were clear. The doctors informed me his heart disease had progressed and that they needed to insert a pump for pain relief. It was devastating. I always knew one day I would be told that and I had tried to prepare myself but no logic and understanding of his palliative condition could have stopped the aching I felt.

I wanted to ring Luke but I couldn't talk. I eventually built up the strength to mumble it's not good, it's his heart, come. By this stage Ethan wasn't moving, just laying there stiffly making a horrible breathing sound. A relaxant was added to his pump to help. During the admission Ethan also had some blood taken. The blood tests didn't show us anything. There was no underlying infection or inflammation.

The next few hours are a bit of a blur of pain control and crying. I wanted to ring people but couldn't. I didn't know what to say. There were questions to be answered and I didn't have the answers. Why should he have to suffer with this and why should the girls have to watch their brother die. I couldn't think of anything else. I eventually rang the grandparents. Not easy.

The next day I managed to start telling people but we still didn't know what and why. So we didn't know what to tell people. Since then we have had doctor meetings and doctor meetings, information and more information but it doesn't matter what they say, it sucks. We know there is nothing they can do to help other than pain control, we know it is getting worse and that one day he will die but there is still a big question mark as to how and when. No one knows.

We are all coping ok. It is harder to deal with when he is lying there not moving and crying but when he is break dancing on the floor and smacking the nurses on the arse, you have a big laugh.

We will be in hospital until the pain is under control.