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.

Jo

New stuff on blog

Twitter

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.

Followers

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.

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

Ethan's Trains

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

Merimbula

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

Christmas and the last couple of months

In November Ethan took part in Aunty Mons wedding. The lead up was long and I wasn't sure if he would do it. One minute he was excited and the next he was over the fuss and was saying he wasn't going to take part in the stupid wedding! The day came and he was great. He was very well behaved and neat all day. My only concern was the photos, he loves to pull faces but we managed some great shots and the day was enjoyed by all.

The last few weeks of school were a nightmare. Ethan struggled and the school made quite a lot of phone calls to me. Ethan was struggling but not the usual physical exhaustion he was having trouble concentrating. The lights were on but nobody's home sort of stuff and he was very precious. He was asking to come home a lot and for the school nurse. His oxygen saturations were good but nurse Heather noticed his heart rate was jumping up and down. It wasn't long before he had a 24 hour cardiac monitor on, a follow up cardiac appointment and a walking test. The outcome being we can't do anything about the heart rate stuff, or the vagueness. This is hard to deal with. If he is struggling physically we can take over but we can't think for him. I hope this doesn't get worse. Sometimes he is on the ball and at other times he is as dopey as they come. The walking test was him walking as fast as he can for 6 minutes. He managed 235 meters. Pretty poor but before sildenafil he couldn't do that!

He also had a respiratory appointment to see what they thought. The chest x ray was the best ever! A heart the size of pharlaps and some clips from heart surgery but the lungs were clear. This was a shock I've never heard those words!! Dr David questioned whether his vagueness is from lack of sleep. He takes forever to fall asleep and is constantly up during the night and then I have to wake him bright and early for the bus. So he is on a sleep chart for 2 weeks. Not the best 2 weeks, he has had late nights non stop and hasn't been to bed at bed time once!!

Ethan's school report surprised me. I had to read it aloud to Luke to see if I was reading it right. Ethan sings the national anthem and the Glenallen school song at the primary school assembly in front of everyone. He is very confident when he's not vague! He is also very confident in the pool apparently..

Ethan is mad about cricket at the moment. He is always wanting to play in the backyard. Lucky for me the girls also like playing so once I've bowled them out and smashed them for 6 I can come back inside and leave them to it!! He is also right into football. The once devoted Kangaroo supporter seems to have jumped ship a few times and is flying the Bombers flag. He loves singing the team songs.




Suited up



More suits



The fam all scrubbed up



Skater boy



Kids happy the tree is now decorated



The Millenium Falcon



Lightsaber kit



Taking out Adam with the new lightsaber



At Nana Hanna's with new cousin Thomas on Christmas Night

The last 2 months

So much has happened over the last 2 months trying to remember it all will be hard.

EastLink: Everybody knows Ethan has a deep fascination with EastLink. He watches the making of EastLink DVD on repeat, he reinacts travelling on EastLink in his play, he has posters and pictures etc. Seeing his reaction to having a personalised tour of EastLink was amazing. He rode in the emergency response vehicle in both directions through the tunnels and over bridges before heading to the control centre. The team organised it very well, altering speed limits and blocking lanes while he was on the road and then allowing Eth to do the same when he was in the control centre. He had a great day. We would like to thank Glenallen and ConnectEast for organising the wonderful suprise.

School Camp: Ethan was also able to attend school camp. Jennifer and the staff at Glenallen took the class to Rosebud for 3 nights. They did lots of fun things but the most exciting thing for Ethan was the ferry trip to Queenscliffe. He was very excited that the boat could take cars on it. He had a great time being away but I struggled. I felt extremely gulity that I was relaxing and enjoying the break. Ethan has been away before but always at the same time as the girls. So having them home and Ethan not around was a reminder of how its going to end up. Very hard few days.

Respiratory Appointment: All went well at Ethan's follow up respiratory appointment. It's the best David has seen and we are going to try and reduce antibiotic cover and asthma medication over the summer months. With saying that Ethan was very disappointed he wasn't being admitted. Ethan has only just started coughing today. 2 months after his last admission; thats the longest dry period for years!

GP: When all is going well something has to pop up. Ethan had a major plantar wart on his foot. He couldn't walk. It was decided (after many discussions) despite poor circulation and the high risk of infection the GP would have to burn it off. It's been a while since I had to physically restrain Eth for a medical procedure and for a little weed he can be quite strong for about a minute until he's blue and looks like he's going to pass out. The bulk of it has gone but we have to go back and do it all again!

Cardiac: Ethan had his cardiac appointment last week. This is the first one since starting on the diuretics and increasing the sildenafil dose. The cardiologists were very pleased. Their "educated guess work" had paid off. They were extremely happy to hear the cyanotic episodes and chest pain had eased a lot especially during meals (meaning he can now eat without constant chest pain) He has put on a little bit of weight and is holding his own luckily. The dietician at monash will follow this more closely when we have our next tune up but it looks like he won't be needing a tube. They are planning follow up appointments with the cardiologist at monash when Ethan is admitted for his chest tune ups and with them again in a year. When questioned about whether that meant he'd be fine for a year with no deterioration they said they couldn't say. "We can't give time frames, today he is good and if he does deteriorate come back earlier". Ethan was even more disappointed he wasn't allowed to stay. He asked Geoff he could sleep in the new hospital for his 10th birthday, that was after yelling "wake up Geoff" and killing him with his light sabre!

Australian Hearing: Ethan had his hearing tested today. There has been no change since July. So at this stage there is no need for a hearing aid on the right side but we do have to make an appointment with the ENT surgeon to have a look in his ears.

Camp Quality: All of the kids got to go on junior camp last weekend. They did a lot of activities including fishing, going on puffing billy, seeing the Thomas show, Music shows, trampolining, flying fox, ball games. You name it they did it. When we arrived to pick them up Ethan pretended he didn't see us as it was nearly his turn on the trampoline! He had heaps of energy all weekend which was great to hear. All of the kids had an amazing time and have cried many tears as they miss their camp buddies!!

Photos to come.....

Day 400

Ethan will be coming home tomorrow after a very ordinary admission. I have done nothing but complain and whine for the last 2 weeks. We have had a lot of issues regarding bed time. I think he waves us of happily so he can get up and play. He has the staff wrapped around his little finger and gets away with murder even at midnight! We have also had major issues with his diet. Ethan is on a high calorie, thickened fluid diet as he has weight issues and aspiration issues so when the wrong meals come that have skinny everything and drinks that aren't thickened I get pretty pissed. I had nurses, food monitors, dieticians, PSA's, doctors and the charge nurse all involved in my anger!! Not sure if I'll ever get reemployed there!!! These issues come at a time when Ethan is at an all time low with his weight to age ratio. We have strict guidelines to follow to facilitate weight gain. If it doesn't go our way he will need to have a nasogastric tube inserted and supplements given either continuously overnight or top up feeds during the day.

Tomorrow is Ethan's 400th inpatient day. No wonder he is so confident there! Just as important it is Erin and Adele's 400th day too. They have had a horrible 2 weeks and both of them are out of sorts. I have warned them about Ethans weight. Adele is not too fussed, knows about the tube, has seen photos of Ethan with one from chemo days but is pretty laid back. Ez on the other hand is terrified. She can remember seeing it in his nose and out is mouth during episodes of vomiting after chemo, and me sitting on him to put it back in etc. Hopefully we can get him to eat lots of fatty stuff and it's not needed.

August Ceftriaxone

Ethan was admitted to Monash last Monday for a chest tune up. This includes the usual IV antibiotics and physio. We were hoping it would be for a week and we would be home today but we are now looking at discharge on Friday. He settled in well and is running the place in true Ethan style. He is very comfortable there. He gives all the staff a high 5 goodnight and waves us off happily.

The IV came out today and had to be resited. He rode the bike into the treatment room, told the doctor how and where he would like the IV inserted and watched to make sure he was doing it properly. Not many 6 year olds would do that! He has also started doing his own medication. The nurses bring it in and he takes control putting in the IV bung and pushing it. He told me the other day he was going to be a nurse!! I'm not too sure what happened to driving the Ghan......

The physiotherapist has been using the vest during physio with good results. This takes some pressure of him when his heart doesn't allow him to participate.

Vids