Cardiac update

Where do we start. A bit over a year ago we were told there was nothing more they could do to correct Ethan's cardiac condition, the VSD couldn't be closed and the pressure in his pulmonary artery was high. He would eventually out grow his heart and lungs.

He has had a great start to the year; happy, playful and doing well at school. He has been developing into a big boy. He is reading and writing. But then he started getting blue and not having much energy. He couldn't do the things he used to, he needed to be carried or put in the stroller and he started falling asleep on the bus, both to and from school. He was also having a lot of trouble sleeping during the night. Life became pretty demanding and his illness was playing a huge role and having a huge impact on everyday things.



He was getting recurrent pneumonias from aspirating. The respiratory doctors were treating him with thickened fluids, antibiotics and physio. He was unofficially diagnosed with bronchiectasis and that is why he had the tune up before Fiji. This was helping but when Ethan had pneumonia a month ago we were told they thought his low oxygen levels was more cardiac than respiratory now.

The line between respiratory and cardiac had become blurred. I wasn't sure what was what. We had his cardiac outpatient appointment and it was decided that Ethan's case would be presented at conference. We were to ring for the results and in the meantime if we were worried or concerned to take him to hospital.

I managed him at home for a week but ended up completely exhausted. I took him to the Kids Hospital. The plan was for 24-48 hours of cardiac monitoring. While we were there his cough was getting worse. He was diagnosed with a virus. The docs kept saying he would get worse before he got better and this is what happened. The virus triggered his asthma. He had a major asthma attack and was placed on huge amounts of ventolin. The respiratory doctors and the ICU doctors were also involved in his care. I had never been so scared. It is a vicious cycle. The large amount of ventolin increased his heart rate to dangerous levels but was needed to open his airway.

The cardiac doctors had their conference. The tests showed that the conduit has become restricted and the valve isn't working, limiting the blood flow and causing him to be bluer and not have enough oxygen. The problem we are faced with is that a bigger conduit increases blood flow to his lungs, yes better oxygen and energy levels but this will flood his lungs, increasing his pulmonary hypertension, causing irreversible damage to his pulmonary circulation. We are backed into a corner, dammed if we do, dammed if we don't.

It has been a very tiring couple of weeks. We have decided to change the conduit. This will be done on the 26th Sept. We are hoping this will give him better quality now and in the short term. As the pulmonary hypertension progresses he will become bluer and his oxygen will drop off again. To complicate the crappy pulmonary circulation he also has reactive airway disease (asthma) and suppurative airway disease (bronchiectasis). Both of these illnesses can cause major complications and it is the thought of what these illnesses can do which scares me the most.

Jo

Day to Day happenings

It has been one year since we were told they couldn't fix Ethan's heart. The words go home and live month by month still ring in my ears but it has been a year and he is bigger and stronger than ever.

* Ethan's speech is still very slow to progress but he is making more sounds and more people are starting to understand him better.
* He is still very little and weighs next to nothing but he can eat!
* He tries to participate in boy stuff. He loves cricket and footy.
* He also loves cars. He is very good at directing and is a very annoying back seat driver!!

Heart: Ethan still has his blue episodes and runs out of breath easy. His oxygen levels remain at about 75-80% when he's well.
Lungs: Ethan has been diagnosed with bronchitises. A chronic infection in his lungs. He is on rotating antibiotics continuously. Since these started he has had less trouble and copes a lot better. Ethan's asthma is still all over the shop but he can tell us when he needs the puffer, which is a huge help.
Kidneys: He had a scan a month ago and all is well. His right kidney is coping very well and the left kidney bed has no signs of cancer.
Ears: He has an ear infection at the moment but otherwise he hasn't had one for a long time. It is his left ear which is oozing so he can't wear his hearing aid at the moment. (He thinks this is an excuse to ignore me!)








Ethan in the foam pit at Erin's gym party













playing in the car at one of dad's bike races













Playing with the dog during the race

Fiji Holiday

As some of you may be aware we went to Fiji in March. Ethan had a planned admission for a tune up before we went. The tune up consisted of antibiotics and chest physio to help dry out his persistent cough and hopefully prevent a chest infection while we were over there. In true Eth style the tune up which was supposed to take a week, went for 2 weeks. This was due to the fact that he had pneumonia on admission which I was unaware of!

Trying to get travel insurance for Ethan was a night mare. The amount of stuffing a round with medical forms and letters was ridiculous. To no surprise his cover was very restricted!!

Fiji itself was great and the kids had a ball. The kids did a lot of swimming and loved the activities in kids club.

Ethan managed to stay well for the first 4 days by the end of the holiday he was fairly unwell. The landing in Melbourne wasn't much fun with Ethan vomiting but it did help us get through customs a lot quicker!!







Ethan at the airport











With Adele waiting to go on the boat during kids club














During 1 of the many sessions at the pool












The kids at the pool

1st day of school

Ethan started school at the start of the year. It was a huge decision for us
as to what school etc but we are more than happy with our decision. Ethan attends
Glenallen school in Glen Waverley. The bus comes to the door at about 7.30am and drops him back to the door at 4.15. It is a long day but he loves it. At the start we were trying to
juggle some kinder time as well as school but this took its toll on everyone involved and
we came to the conclusion to do school full time. He loves school that much that it is used
to rectify misbehaviour. "I won't let you go to school tomorrow" "No bus" It works a real treat!

He has a full timetable and has learnt a lot. He loves reading and writing as well as all the fun classes; swimming, music, home crafts, library etc.

What else can I say, Look at the big school boy....

Birthday #5

Ethan celebrated his 5th birthday in January. We hired a jumping castle
for the day and invited a stack of kinder friends. Being a January day I didn't
worry too much about the weather but I should have. It was during the heat
wave, 42degrees outside and a lot more in the castle!! We had a lot of very hot
and bothered kids. Ethan had a great day.












Setting up the train tracks with his train mad friends












Playing pass the parcel.










The Thomas ice cream cake before it melted everywhere!

The number 5 cake he had with the family.


Ethan's plaster was supposed to come off on this day but as we had booked the party
it was postponed for a week. By the 25th it was smelling worse than a boys locker room!
On the day he spent the morning practicing how to take it off with his pretend drill and saw.
He was cool and excited about the whole thing. He jumped in the car and was giving high 5's,
thumbs up etc. It all came undone when he heard the real saw. He was so scared and upset
he couldn't move. With a lot of force his arm was kept still and the plaster removed!

Christmas

We all had a great Christmas. Santa was very kind to the kids!
It was the first Christmas where all three kids were excited.


















Ethan loves his Bart sleeping bag.

Luckily Santa knew he still loves trains!

the latest

Since the last entry

The Mack truck that was getting sent from the US arrived. Since the day it got here, it has gone everywhere, in the car, in the pram, on the bike, to bed, to hospital. I mean everywhere. I drew a line at it sitting to eat with us!! He absolutely loves it. Thank you to Leesa and Mason you made his day.

Ethan has had a couple of hospital admissions...

First was a bout of pneumonia. He had been on antibiotics at home and was still having fevers so a trip to Monash was needed. The chest xray didn't look to bad but due to the ongoing fever they started IV antibiotics and a bit of oxygen! On discharge his oxygen levels had improved10%. The respiratory consultant believes he has a chronic lung infection, bronchiectasis and has therefore commenced 2 months of antibiotics. A review has been organised for the start of feb.

Second was a fractured radius. Yep, he finally had enough energy to run and play and he falls in the park! He is a tough little bugger. The fall happened Saturday night and it wasn't until Sunday afternoon (at a kinder friends birthday after playing in the park) that Luke noticed he wasn't using his right arm. He said it was a little sore! The docs put on a half cast and made us an appt at the plaster clinic. The doctors at the clinic reviewed him and it was decided to put on a full plaster as he was moving his arm too much. The plaster also has a fibre glass coating for extra strength!

The third was an elective admission for grommets. There was plenty of stuff ups on the day, like no bed, waiting in the foyer, being wheeled to theatre twice before a third time lucky but once he was in theatre all went well. He recovered quickly from the anaesthetic and we were out of there. After seeing the three favourites, nurse Kate, Sally and Carly.

Ethan no longer qualifies for Dandy Valley School so over the last few months I have spent a lot of time going through schools and reading info about speech and development. It has been a tough drawn out process but we have come to the decision, Ethan will repeat preschool as well as attend a school for children with severe illnesses in Glen Waverley. He can catch a bus to and from school however it means he will need to be on the bus at 7:45am. Ethan doesn't wake until I wake him at 8:45. This will be hard. It was hard to say goodbye to his teachers at Dandy Valley they have played a big part in his life and we are lucky to have had so many caring people in our lives.

Ethan has also had to say goodbye to his speech therapist who is moving on to a new job. At first Ethan hating going but Hazel kept persisting and trying new things. She won him over and he insists she stay working with Jane. It was amazing to watch their relationship grow.

We have also had christmas parties. The highlight once again being Challenge. Challenge is truly amazing, the services they offer to families is wonderful and very overwhelming. This years christmas party was no exception.

Ethan is excited about Santa and he is as equally excited about turning 5 after santa. Ethan's kinder friends have all turned 5 and he was asking when he was five. I told him in January and looked at me a little confused ah, after santa! Yep he understands he is five in January after santa. At fountain gate he saw santa, he was so excited not only to see santa but he had now turned 5 after seeing santa!! Boy was he dissapointed.

On the scale of growth it is official he is Adele's little brother and she loves to tell everyone "I'm bigger" . Even though he is little he is plodding along at the same rate at usual, just under the graph.

We hope everyone has a happy and safe christmas and new year. Wishing you all good health for 2007.

photos coming

Boy's will be boys....

  

Ethan James Hanley and Family Appeal

Well, It's been a month since the appeal and I think I have finally got my head around what happened and how it all come about.

For those who don't know a surprise fundraising day was organized and all money raised went into the Ethan James Hanley and Family Appeal trust account. The day included many activities; Thomas rides, face painting, mini golf, handball competitions, nail painting, there were entertainers, a sausage sizzle, fairy floss, raffles and an auction.

A big thank you to family friend Narelle for organizing the day. It was a huge surprise and very overwhelming. We would also like to thank the companies and organisations that helped Narelle put together a wonderful day especially Westfield Fountain Gate who provided the catering, entertainment, and decorations for the day. Many companies and organizations donated goods towards the raffles and auctions. The generosity of these companies made the day a huge success, Thank you. We would also like to thank everyone involved in the running of the day and a big thank you to everyone who donated to the appeal. We all had a wonderful day. Thank you!!!!

Clicking on the image below will take you to a web photo gallery

Ethans Fundraiser

last couple of months

Where do I start? Since the last entry...

We have had Ethan's referral to Australian hearing. It was decided that he would benefit from a hearing aid due to the lack of expressive language. I had no problems with this, we would do anything to help him talk but I was a little taken back when she asked what colour he would like and then proceeded to pull out a colour chart bigger than that at a paint shop! In true Ethan style he chose blue and red. He was proud as punch telling people he was getting Thomas in his ear!!

Thanks to the Hanleys we have also started private speech therapy. This was a struggle at the start. Speech therapy is very confronting for him. It is a lot of hard work. He struggles and thus wouldn't participate and behave very naughty at the appointments. Hazel the speech therapist came up with the perfect solution. He now attends by himself. No negative attention for being naughty. Works a treat.

We have started compiling the application for another year of kinder. The kinder teachers believe there won't be an issue and are delighted to have him back. We are not sure what other services he can access next year. It all depends on his IQ, which was tested last week. We should have a result within the next month.

Overall his health has been pretty good since the last entry. A few temps here and there but nothing that has interfered with daily living.

He has had a few outings worth mentioning.
We went to Disney on Ice (thanks Em). We caught the train in, went on a tram, saw Buzz and Woody and Nemo. He was excited all day.
Ethan and Erin also got to go on junior camp with Challenge again. They love camp, they are spoilt and treated like royalty for a night.
We also got tickets to Carlton v Richmond at Telstra Dome. After the game we went into the Carlton rooms to meet the players. Unfortunately they were a bit disappointed about losing and were worse than tantruming toddlers! We did meet a few players and were grateful for the opportunity.

Ethan has also got a new love. The movie 'Cars' especially Mack. He has learnt the lines and loves the music. He doesn't have Mack but has found a truck in his collection that fills the role. We have spent a lot of time trying to find Mack and have managed to track one down (thanks to Lees in the US). Can't wait to see his face when it arrives.

A report on last Saturday's appeal day is coming...

Jo