Pre-admission

Ethan has had a couple of busy days in preparation for the big day. Monday was a 12 hour day that included the usual work up prior to heart surgery. (Echo, ECG, Xrays, bloods, urine test, physio consult, doctor admission, surgeon consult etc) All was going to plan. We were at the last step when the cardiac fellow said she wasn't entirely happy with his chest. From that point it was a bit up in the air. An anaesthetic review was arranged (this was going to happen the morning of surgery) but because it was late the cardiac anaesthetists had gone home. The oncall anaesthetist said we should see a respiratory physician. After waiting around they came up with the plan, come back tomorrow. As I am still on crutches and can't push Ethan in the pram I had to speak up a little and demand an appointment time.

The doctors rang on Tuesday morning. I had to be there by 2 for an appointment that could be anytime after that!! The respiratory team were very punctual, they gave Ethan the once over, then the twice over before organising a physio session, the risks of surgery were spoken about yet again, and a pre-op plan was given. This includes a morning physio session and a pile of ventolin.

The plan is that Ethan will have a change of conduit tomorrow morning. Unsure of the exact time but we need to be at the hospital at 6:45am. The operation itself will go for 6-8hours minimum depending on the degree of scar tissue. His first heart operation went for 13.5hours and the 2nd went for 6hours, so we know about waiting around!

I must admit it is a lot harder this time. The first 2 heart operations were making him better. The outcome was for him to grow into a healthy young man. Unfortunately they didn't go as planned and we are now faced with our current situation. The risks are bigger and the outcome is for a better quality of life in the short term. Hopefully this will go to plan but there are no promises....

Ethan hasn't had any more seizures. The EEG results show no epilepsy but it does show an abnormality. Not sure of what exactly and as it doesn't impact on what we are facing currently I haven't chased it up fully. We will be seeing the paediatrician about it once Ethan has recovered.

The make a wish foundation have granted Ethan a wish. Ethan wished to sleep on a train. We are not sure when it will happen but we are going to go on the Indian Pacific. He is very excited and he will tell you at some stage, probably straight after telling you you're a loser, showing you the Homer dance and that he went on Puffing Billy!!!

jo

Puffing Billy

We scored some tickets to Puffing Billy about a year back and finally made the trip up the hill to Belgrave on Saturday. Can't go wrong with a train ride and all the kids had fun.

 

 

 

 

surgery delayed

Ethan had his cardiac appointment at the end of last week. He was walking around the clinic and down the ramps. He was in great form, I hadn't seen him that active for ages. We saw Dr Jim who was happy with his chest and recommended we go ahead with surgery. How ever surgery has been delayed due to our surgeon going away. It means we will change surgeons and squeeze in on the 10th October.

This brought mixed emotions. Changing surgeons, yes they are all good but we like ours, it is now during the school term which means more running around, and a bigger impact on the girls and I need to be fit and healthy to do it (for those who don't know I tore my ankle ligaments a couple of weeks ago, I'm still in plaster, and not allowed to drive!) It is going to make it harder if it doesn't recover quickly from here. But on the positive Eth was great, we can now see the Thomas show and spend the holidays together.

But as usual it was the calm before the storm. The next day he started getting chesty and requiring oxygen. The next few days were up and down. I took the risk and sent him to school so I could put my foot up but they rang at lunch time, his sats were 60%. He has remained at home requiring oxygen on and off. His asthma is up and down with it as well. I have 19 days to get him back up and running and to get myself back up and running. By this time Luke and the girls will need to rest as they are doing a hell of a lot of running now!!

He has also had a few more seizures. He had the EEG a few weeks ago but I haven't been able to chase up the results, too many other things going on!

I will update this again before surgery and we will keep it up to date following surgery. Take care, Jo

Focal seizures

Ethan was recovering slowly from the RSV. He remained a lot bluer and lethargic but was keen to have a couple of hours at school. The portable oxygen was set up, the bus arrived and all was well.

I got there at 11 to pick him up. On arrival Andrea, Ethan's teacher made comment about his facial twitching. There was a slight twitch at the side of his mouth which had been there all morning. As we stood there talking it got worse. It became a flickering of his face and he was absent. I rang the doctors and Ethan was readmitted to the kids hospital. We were told he would need to undergo some scans and tests to find the cause. Ethan had an MRI under a general anesthetic. It was a nervous wait but we were told the words we wanted to hear, "there is no tumor and there is no evidence of major stroke"

The next day the neurologist came to see us. "There is no evidence of any tumors or of a major stroke but it does show he has had a stroke in the past, and he will need to have EEG test to rule out epilepsy". This was at the front of my mind for a while but he was fine and there was no evidence of any more seizures, purely symptomatic to being so unwell the few weeks prior, so it quickly moved to the back of my mind and his cardiac function resumed front position.

He was getting back into school. A half day here and there, a full day Friday. The weekend to recover and a full day Monday was the plan. All was good. He was at school on Monday when his oxygen levels dropped. The school nurse recorded them at 60%. From there he has deteriorated requiring oxygen full time and at higher rates. I diagnosed pneumonia and rang his respiratory doctor with a request that I increase his oral antibiotics, give him oxygen full time at home, give him chest physio a few times a day, get an xray at his cardiac appointment and we stay home. This was agreed to but he also said he can arrange an admission if needed.

We had the cardiac appointment yesterday. A chest xray was done and yes he has pneumonia. The plan is to keep managing him at home and a review in 2 weeks. We are now facing the dilemma of delaying surgery. I tried to tell them after the RSV that he would get pneumonia before surgery. They like it to be 6 weeks after a chest problem before cardiac surgery but Ethan will not go 6 weeks!

The other issue we are faced with is that since his oxygen levels are lower (65% with 2litres of oxygen) he has had another 4 seizures. They were all small but they happened. It seems they are linked to hypoxia. We are able to increase the oxygen while he is unwell to help reduce them but we were warned its not good for his lungs!!

Jo

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!