Saturday, October 31, 2009


Sorry it's taken a while to update.

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

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

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

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

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

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

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

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

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

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

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

Friday, August 14, 2009


The last few weeks have been tough. The team from South Eastern Palliative Care and the Childrens Palliative Care unit came out to the house. The main objective was to explain what they do and to provide us with the help and support we need. It was information overload. They offer a lot of different things; nurses, doctors, counsellors, respite, music.

The Childrens unit is putting together an application for some respite. We are hoping for a few after school hours because even if Ethan is well enough to attend school he comes home completely stuffed. It is then very hard and difficult to go to the girls after school activities. We've had nights where Ethan has cried for hours because he's completely buggered and can't manage another thing other than to sob. The girls are very caring. They love him lots and have offered to cancel all of their activities and stay home to help but thats not fair on them. They are torn between being kids and being nurses. We have relied on friends to take the girls which is the easy option for me (if you can call staying home caring for a sick child easy) but also very hard on the girls. They struggle knowing I'm not there because Ethan is too tired and sick. They need us more than ever to give them the support and help they need but it's hard physically to be in 3 different places. I have cut my work hours in half to try and help with this.

South Eastern Palliative Care are providing us with music therapy, counselors and nurses. All 3 kids had a session with the music therapist who is also a counselor last week. Ethan banged some cymbals for a few minutes, was completely stuffed and left the therapist with the girls. The girls loved it. They played instruments and sang. Cherie (the therapist) recorded it and will bring their CD to the next session. The sessions will be every couple of weeks. They are also providing a counselor to speak to me and Luke about how to speak to and how to promote the girls to ask questions and be involved with Ethan's care. A nurse also comes out to the house every 1-2 weeks to check up on things.

A Care in Context nurse from Southern Health has also been visiting. Her role is to provide support within the community. We have put in an application for a short term package through Windermere. We firstly thought of using the package for respite but now we aren't too sure as the Childrens will hopefully be providing us with that. An electric wheelchair is something being spoken about. Eth has a self propelled chair but he can't get from place to place like he used to. He borrows an electric chair at school. The first thing he learnt was how to do dough nuts and use the horn!!

We have had a few paediatrician appointments over the last couple of months. Chris has been great and we are lucky we have a good paediatrician for support. It's just a shame he lives so far away. He has been ordering blood tests and following them up and calling. He has also spoken with our other doctors so that everyone is on the same page etc.

Last week we had a cardiac appointment. A 'Childrens Palliative Care' doctor also came to the appointment. Lots of issues were discussed. It has been decided that Ethan is not for resuscitation. The palliative care Doctor will come out to the house next week to sign all the paperwork and they will provide everyone involved with him the information. Ethan has also been grounded, no flying. All holidays will be planned with the palliative team to provide support at our destination. It was also mentioned that Ethan's heart could fail him suddenly at any point and that we should word the girls up. However with saying this, things could progress slowly. They have no idea and couldn't give us a time frame. Ethan is still getting bad leg pain. His calcium is now in normal range but his Vitamin D is low again. He has started a supplement for this. I am trying to remain optimistic that the leg pain is from the low Vit D and not because they are suffocating with no oxygen. He is also getting headaches and becoming hypoxic. So the chances the leg pain will stop is very slim. When the palliative doctor comes out next week she will be bringing some drugs to be kept on the top shelf. He is also using the oxygen lots. We have a monthly limit which we have just gone through in 1.5 weeks. Next week I will be chasing up the respiratory team who provided us with the oxygen for an increase. They also need to sign off on the oxygen company being able to drop the oxygen off at different locations and get a converter for school.

Ethan has just received a Palm Top 3 through the Aids and Equipment Program. It is a computerised communication device. He loves it. It is like his communication book but it is computerised. He uses a stylus to enter different areas and can even type things in that aren't programmed into it. We can also record Ethan's news on it. When the dogs bark Ethan goes to the door and yells 'shut up', today I heard the computerised voice of his Palm Top saying 'shut up dogs'. It was very funny.

Monday, July 20, 2009

Cardiac update

The start to term 3 has not gone to plan. It all started on the Sunday prior when Eth had another haemoptysis episode. I kept him home Monday to keep an eye on him but he was fine, so we sent him to school Tuesday. The school nurse saw him at school and started oxygen but he was well enough to stay the full day. On Wednesday, Eth called for the school nurse again but this time the oxygen wasn't helping. I drove to pick him up and had decided that if he was still yuck when I got there, I would go straight to emergency, but as usual he had picked up. Eth spent Wednesday night asking to go to hospital, so after no luck trying to chase his doctors, I planned to take him on Thursday just to make sure he was ok. I thought we would have to sit and wait as he seemed normal, but we were straight in. His oxygen levels were barely 60%. The things you get used to!

While in emergency he had another haemoptysis episode, he was short of breath and cyanotic. Blood tests and xrays were ordered and an admission planned. After 12 hours in emergency the ward finally had enough staff to open a bed. The plan with the admission was to monitor for any more bleeding, increase his sildenafil, cease his asprin, continuous low flow oxygen, rehydrate and fatten him up. If the bleeding continued he was to have a bronchoscopy.

He was pretty flat for the first 2 days but then seemed to pick up and be cheeky. We had some doctors saying go home and others saying we couldn't, so I decided we weren't leaving until I was satisfied we wouldn't bounce back in. We needed a plan and some support within the community. Our respiratory and cardiac doctors were both back on Monday, so I wasn't leaving until I saw them. Both covering doctors agreed with my concerns so we had day leave on Sunday and saw the doctors today.

I had a pretty indepth conversation with our cardiac Doctor, Sarah. His pulmonary hypertension is causing blood vessels to rupture and then he coughs up the blood. The cardaic tests he had a little while ago support that the pulmonary hypertension is worse. The walk test, even though he walked further than last year shows his sats after the 6min mark are extremely low. It represented the results of the stress test when his heart wasn't receiving enough oxygen. The increase in Sildenafil is the last (unless he puts on a stack of weight) as he was already on a high dose, now it is extremely high and like all drugs there are side effects we need to monitor. He already has all the minor side effects, so we don't want to push it too far. So far these changes have helped Ethan. He has more energy and isn't coughing blood. Here's hoping it continues..

The blood test show that his Hb and calcium levels are a bit low. There is no need for treatment for these at the moment but he will have another blood test in a couple of weeks to see how things are travelling. He needs to start high calorie nutrition drinks and we need to pump calories into him, but it is hard as he is still going blue during meals, not complaining of chest pain anymore, but pulling up short because he is blue and buggered so good luck to us (this could also be a side effect of the sildenafil). If he keeps losing weight we will look at night feeds via a nasogastric tube.

The pain Ethan experiences in his legs is also heart related. Not alot we can do. Just try and make him comfortable. He will require the use of his wheel chair more often to help. Low flow oxygen can also help with pain and headaches. For management and support at home I have re-emphasized the need for correspondance to our paediatrician and we've been referred to South Eastern Palliative Care. Not sure how long it takes for them to get in contact with us but the referral was faxed to them today.

Our little man has remained happy and cheeky despite what is happening to him. It's sometimes hard to believe he is so sick because he is always happy. It is usually at night when he feels the need to complain. We are not too sure what is around the corner, but we have tough times ahead (so the doctor told us!).

Friday, July 10, 2009


The school holidays started great. Ethan was excited about the day visits we had planned and catching up with all of his 'normal' friends. During the school term we are very busy so it is impossible for Eth to catch up with the boys he was friends with prior to them parting ways with school. During the first week we went to Ice Age 3. Ethan loved it. We arrived on Hanley time so had to sit down the very front. Ethan's laugh echoed through the cinema and had everyone laughing hysterically. His high pitched chuckle didn't stop until the credits rolled. He was very blue and buggered by the end, I had to carry him out of the cinema! We also went to the Star Wars exhibit at Scienceworks. Ethan loved it. It has renewed his love for Star Wars and episode 3 has been played over and over again since. Not to mention him trying to use the force to get his own way. Sometimes I go along with it and he actually thinks he's a Jedi. It's when he is using the Darth Vader lightsaber that I need to be concerned!

Building magnetic lego trains with Ez

Racing Cathy Freeman at Scienceworks

Ethan also had an ENT appointment in the first week. Both ear drums have big perforations but are dry and clean. He was given the all clear to start wearing his hearing aid again. His hearing was also tested and nothing had changed from the previous tests. The biggest thing to come from the ENT appointment was Ethan's black eye. I am still not 100% how it happened but he slipped and landed eye down on a soft chair. When he looked up his eye was red and swollen. As he realised, he became annoyed with the lack of sympathy coming from me and the girls, so he crawled under the chair. I finally persuaded him to come out to have him pull back and smash the back of his head on the chair. Geez did he scream.

Eth's shiner, shortly after the incident

Eth also got to catch up with Nanny Judy and Cousin Leisa. He didn't want to feel the baby kick but the next day spoke non stop about it!

The second week of the holidays started with a sleepover at Nanny Heather and Poppy Syd's followed by sleep over at Nanny Kaye and Poppy John's. He was very excited and happy to be going. It was at Nanny Kaye's when Eth started coughing blood. The first time I put it down to Eth's ears. Sometimes when his ears ooze, the ooze runs down the back of his throat and he coughs it up. I told Kaye not to worry, it happens. I was annoyed as he just got the all clear for his ears, but that's life. The next morning another phone call from Kaye, more coughing of blood and he was blue and flat. The thought it was something more than ears entered my mind. I tried to get an appointment with our paediatrician but he was fully booked. During my heated conversation with the receptionist I found out that our paediatrician, Chris, was covering the Warragul hospital so I decided thats where we were going. By the time I got to Yarragon, Ethan had picked up. He wasn't blue and flat, but we still needed answers, and with Ethan's past history we needed to know the bleeding had stopped. I knew with how he was presenting we would have to wait, but I knew all the tricks to get straight in. I made Eth walk to the triage desk so that the Triage nurse would panic about the low sats and his work of breathing. It would have worked a treat but by the time she saw us he was back to his normal. Take a seat in the waiting room and we'll be with you soon. Not what I wanted to hear, but he was looking his best and he was happy we were in hospital. We only had to wait about 30mins before we were seen. The resident looked him over, stated she would tell the paediatric registrar, but he wouldn't need to do anything and we will be going home. I didn't wait to have a bit of a once over and told to go. Luckily for us the paediatric registrar was more in tune with Ethan's diagnosis. He was very thorough getting a history and assessing Ethan. A chest xray was ordered and he rang Chris. My plan to see Chris had worked. He also rang our respiratory doctor. From all of this it was decided Ethan had to stay for monitoring. The most likely cause for Ethan to be coughing up blood (haemoptysis), was a burst blood vessel in the lung caused by his pulmonary hypertension. Ethan was hoping to stay but I kept saying we would be going, as he looked fine. So when the registrar told me he needed to stay, I got him to tell Ethan the good news. In true Eth style he asked for 5 nights! So negotiations started, I quickly helped the doctors, "Eth it's one or none, take your pick" He chose one! He didn't have any more haemoptysis episodes and we were allowed to go the next morning. Eth tried to negotiate another night but it didn't work!! The plan was for an appointment with our respiratory doctor in 1 to 3 days. It was hard getting an appointment but I managed to be very pushy and we had our appointment. His lungs are clear, no more signs of bleeding, no signs of infection and no asthma. All good. But we need his cardiac status looked at. Nothing we didn't know. We have those appointments coming up during the next month. So we have to wait until then. One thing all the doctors said during this was that he is very skinny. So high calorie food is big in our house at the moment.


Monday, June 29, 2009

Term 2

Ethan has remained up and down. Sometimes he is great and full of cheek and at other times he is quite flat. We have had numerous appointments trying to get to the bottom of what is happening with him.

Paediatrician: Chris had not seen Ethan since before Sildenafil so even though I was very concerned about Ethan, Chris couldn't get over how great he looked. He had the results from the sleep study infront of him. He suffers with delayed sleep onset and reoccurring awakening. No suprise there, the bags under my eyes could have told them that! As a result Ethan was commenced on Melatonin. It works great. 5 drops before bed and he's out like a light. The only problem was that he was still waking during the night. With a bit of trial and error we know that a couple of hours of oxygen at bed time stops that. I am happy we have worked it out but annoyed that maybe the last 5 years of no sleep could have been avoided!!

Respiratory physician: David was happy with his chest. No wheeze or crackles. All clear. It's all cardiac. I was hoping he would tell us it was pneumonia so that he could have some antibiotics and be better but this meant it was all cardiac. (and we know with his cardiac issues there's nothing we can do)

Cardiologist: Tests and more tests. The 6min walking test was first. He managed 328m. The last walk test he managed 235m. A great improvement with distance but his oxygen levels during the 6 minutes dropped dramatically. They started at about 80% and dropped below 55%. He struggled and grabbed his chest a few times. He also had to be hooked up to a holter monitor for 24hours. In the next couple of weeks he will have an echo. We go back to see her in August with the idea the Sildenafil dose may need to be increased. He is already on a high dose but they can go extreme! That's if the rest of his body can cope with it. Not too sure what I'm hoping for.

ENT: Ethan's hearing and ears remain a problem. He suffers with constant ooze from both of them. He was commenced on ear drops which causes him a lot of pain. With everything he has been through it's hard to believe ear drops cause him to run screaming. Everytime he saw the bottle he would go and hide, but he was easily found, I just had to follow the screaming!

Since these appointments Ethan has remained blue and puffy at times. The school nurse has reported episodes of tachycardia and fatigue at school. I am hoping the holter monitor has recorded some of these episodes. He is also coughing more. The clear chest he had has definently gone. But he did manage to avoid Swine flu even though it was in the house (Poor Adele copped it bad). Ethan was commenced on Tamiflu and was given the influenza needle. This did the trick and he didn't come down with it.

We have also sat the girls down and told them about Ethan's prognosis. Not an easy conversation but one that had to be done. Both girls reacted differently. Erin got in first with what she thought and Adele cried and changed the topic. Not sure if Adele changed the topic because of her immaturity or as a diversion technique. I also spoke to their teachers so they could keep their eyes on them. It is good knowing both girls are in caring hands when I'm not around. They both openly ask questions as they arise now, whether they're at school or at home.

Ethan is still enjoying school. His work ethic is up and down depending on his health. The goal of Ethan being able to write down words or part of words to help with his communication is coming along. He is picking up on this and using these skills with You Tube and Google! His 2 teachers, Jennifer and Mary are great. They are alot more patient than me!

Ethan's love for footy is bigger than ever. He loves watching it if the team he is barracking for is winning, if they're losing he is the biggest sore loser. He is known to kick, throw punches and run off crying. During the Collingwood v Bombers game, He hit Uncle David with a stuffed pig when the Magpies kicked a goal even though the Bombers were in front at the time. He can't handle losing, but is very quick to stir and rub it in if his team is winning and yours is losing.

Ethan is constantly thinking and talking about loved ones. He has been speaking about Poppy John (my uncle John) a lot lately. My cousin Leisa is pregnant and after the baby is born he wants to take it to visit Poppy John. When I asked him how, he said he would hold the baby in the plane as it flies in the sky through the clouds to heaven. I explained that it couldn't be done and he got angry that the new baby couldn't play with Poppy. He must be thinking about it a lot because one morning when I woke him he said, "I'm not going to school tomorrow, I'm sleeping at my cousins, I love my cousin, cousin Leisa". Apparently Ethan is going to give the baby brown and blue icy poles like Poppy did for him.


Wednesday, May 20, 2009

New stuff on blog


We have set up Ethan on Twitter so we can send out quick updates to the world when he is in hospital, at an appointment or doing anything we think is interesting. If you use twitter, just click the 'follow me on Twitter' link in the right column.


On the right side is the Followers section. It's just a way to say you're a fan of the blog. You need a Google or Yahoo or AIM account to register though.

Friday, May 08, 2009

Term 1 and Easter

Ethan enjoyed his 7th birthday and as usual he was spoiled by all. He loved opening presents and his Mustafar cake, for those unaware Mustafar is the lava planet in Star Wars where Anakin and Obi-Wan fight. I was hoping to make a number 7 but as usual Ethan wanted something more difficult! He has already started compiling ideas for next years cake. I'm thinking I may need to attend a cake decorating course before then!
Over Easter we went camping. We camped at the same farm in South Gippsland as last year. There was water in the river this time but still not enough for a good fishing session, but it didn't seem to bother him. He enjoyed going for bush walks and spotlighting, but like all physical activities he is restricted, so he spent a lot of time watching DVD's and playing his PSP. He sat in the front of Poppy Syd's car with them plugged into the cigarette lighter. Poppy's car had to be jump started!
During the Easter break we also went to Lancefield for a couple of days. We stayed in a cabin which Ethan loved. He loved travelling on the freeways and following where we went on google maps! We were also lucky to attend a childrens show performed by the Melbourne Symphony Orchestra. It was very interesting and Ethan enjoyed himself. He particularly loved the starwars music!
Ethan has had a good start to the school year. He is very keen and motivated to do school work. A total turn around to last year. Last year was all about socialising but this year he has turned into a little geek wanting to do lots of work. He is being rewarded for his efforts and is happily showing everyone his certificates of achievement. His reading and writing is coming along and he is starting to recognise more and more words. We are hoping that when we can't understand him, he'll be able to write the word or part of the word etc.
School camp will go ahead again this year. Ethan is looking forward to it. The girls are also looking forward to the break. He has been very demanding lately. Putting a lot of pressure and strain on everyone so a few days respite will be appreciated by everyone.
Medically, he is a bit of a mystery. He has had a great start to the year with only a couple of ear infections but over the last week he has been asking for oxygen and having episodes in which he looks like he is running a fever with all the usual symptons but no temperature. It is horrible seeing him so flat after he has had such a good run. It reminds us that he is very sick and not to get too comfortable with life as who knows what is going to happen. It affects the girls too. Erin expresses how sick he is and how colds and flus could be fatal to him. She gives him lots of cuddles and says things like "no matter what happens I love you". He has a few appointments coming up so hopefully we can get some answers.
He had his hearing tested last week. The left ear hasn't changed with mild to moderate loss reported. The right ear is slightly worse than previously but doesn't require a hearing aide at this stage much to Ethan's disgust. He was hoping for another aid, he has even chosen the colours!
Overall Ethan has a great start to the year

Tuesday, April 28, 2009

Ethan's Trains

After weeks of pestering, Ethan can now watch his own trainset on YouTube, as well as everyone else's.

Thursday, January 15, 2009


It brings me much joy to be able to sit and type about Eth turning 7 tomorrow. I thought it would never happen and that his 6th birthday would be the last. This time last year he was in heaps of pain, his mobility was extremely restricted and he couldn't eat properly. It was a very tough time but I am pleased to say this has changed and he is a lot better. In April they started the wonder drug and for the first 4 months we saw no real improvement but then it was increased to nearly double the dose and we have witnessed a new boy. He is a lot more confident and happy and can physically do things. Don't get me wrong his health issues still affect his daily activities and the rest of the family but he is 100% on last year.

During the first 2 weeks of January we went on a family holiday to Merimbula. Ethan had a ball. We took his bike which he loved riding everywhere. He rode it whenever he got the chance. He loved hooning around the caravan park on it. He cracked the sads at the Bermagui mountain bike trail because I wouldn't let him go with Luke on the big trail. He argued black and blue he could do it and sped off down the track! He even rode to Pambula and back, a total of 17km with me jogging and pushing him up the hills but he did it. (This time last year he couldn't even walk to the letterbox and back). He also loved going swimming, driving the boat and playing cricket.

Hope you enjoy the holiday photos. We will post birthday pics next week