A bit has happened recently. Ethan had his latest Cardiac Catheter procedure on the 24th April so the cardiology team could get an up to date assessment of his heart condition. We weren't told much afterwards apart from one of the Cardiac Fellow's saying it was unlikely they would operate on him soon. The results are discussed on the following Monday with the surgeon's. We eventually received a letter from his Cardiologist saying his blood flow to his lungs is still quite restricted and there is little likelihood further surgery or ballooning narrow arteries would help. If they closed his hole and replaced the conduit with a bigger valve, it would put too much pressure in the lung circulation and cause damage to his lungs over time.
Next was a visit to the Peadiatrician. He had in front of him the 'technical' version of the cardiology letter. This basically said there wasn't anything they can do for Ethan, apart from possible palliative surgery. He is walking a fine line. Ethan is out-growing his heart and his lungs.
So we booked an appointment with the Cardiologist to clarify things, Dr Jim said 'Will he live to 70? No. Could he live to 20 or 30...well...maybe..possibly..but there's other things going on'. He said the asthma medication is not good for his heart. He then went on to say to take things on a month by month, week by week basis. So we left there feeling pretty average.
We visited the Peadiatrician yesterday who was a bit more upbeat about his prospects. Sure, he will struggle during the colder months, but he feels we should take things on a year by year basis. Should we move to Queensland? won't make any difference. Can he have a heart/lung transplant? Unlikely candidate as he is only 18 months past chemo treatment, plus it is nearly impossible to get heart/lungs the right size, plus the right tissue type, plus the anti rejection drugs aren't good for you either.
On the positive side of things, Ethan had his Oncology appointment on Tuesday (abdo ultrasound and chest xray) and all is clear. His Doctor is very happy with his progress.
Apart from all that, he is into karate chopping people and being a real little boy. He is pretty happy when he's well.
Luke
Thursday, June 15, 2006
Wednesday, May 24, 2006
Friday, May 19, 2006
what's next?
It has been that long since the last entry I'm not too sure where to start. We are not sure what is around the corner for Ethan.
Ears - Ethan had his hearing tested again. It has improved somewhat but is still not optimal. He has normal hearing in his right ear but moderate loss in his left. The ENT people have referred us to 'Australian hearing'. He may require a hearing aid for his left ear.
Heart - A cardiac catheter was done a few weeks ago. The cardiologist will present Ethan's case to the surgeons and get back to us. He appears to be bluer than usual but that may be his colour until the end of winter!
Lungs - His asthma has been all over the shop. It now appears to be triggered by activity as well as cold air and ill health. Sometimes the puffer is needed every couple of hours and he doesn't go anywhere without it.
It is now hard to know what is asthma and lung and what is cardiac. He is trying to do more but is very limited due to these factors.
Kidneys - He has his oncology appointment including ultrasound and xrays in a few weeks. He also has his radiation oncologist appointment coming up.
Development - He is still enjoying kinder and early education. We are in the process of deciding what school/kinder/activities to enroll him in next year. Basically it all depends on his IQ. So we are in the process of signing consents and collating a history for the IQ testing.
Social - His kinder friends can now understand him and his actions. He has been very busy at kinder playing! He also went on junior camp with Challenge. This involved two busy days of fun and more fun. Challenge are amazing at what they can get done with the kids in two days.
Family - We have been on a family holiday to the gold coast. Ethan loves telling people about the planes and trains. We went to movieworld, seaworld, Australia zoo, and tropical fruit world. We all enjoyed the rides. Ethan loved the train rides and monorail. It was great to get away. A huge thank you to Challenge for making this happen!
Photos soon
Ears - Ethan had his hearing tested again. It has improved somewhat but is still not optimal. He has normal hearing in his right ear but moderate loss in his left. The ENT people have referred us to 'Australian hearing'. He may require a hearing aid for his left ear.
Heart - A cardiac catheter was done a few weeks ago. The cardiologist will present Ethan's case to the surgeons and get back to us. He appears to be bluer than usual but that may be his colour until the end of winter!
Lungs - His asthma has been all over the shop. It now appears to be triggered by activity as well as cold air and ill health. Sometimes the puffer is needed every couple of hours and he doesn't go anywhere without it.
It is now hard to know what is asthma and lung and what is cardiac. He is trying to do more but is very limited due to these factors.
Kidneys - He has his oncology appointment including ultrasound and xrays in a few weeks. He also has his radiation oncologist appointment coming up.
Development - He is still enjoying kinder and early education. We are in the process of deciding what school/kinder/activities to enroll him in next year. Basically it all depends on his IQ. So we are in the process of signing consents and collating a history for the IQ testing.
Social - His kinder friends can now understand him and his actions. He has been very busy at kinder playing! He also went on junior camp with Challenge. This involved two busy days of fun and more fun. Challenge are amazing at what they can get done with the kids in two days.
Family - We have been on a family holiday to the gold coast. Ethan loves telling people about the planes and trains. We went to movieworld, seaworld, Australia zoo, and tropical fruit world. We all enjoyed the rides. Ethan loved the train rides and monorail. It was great to get away. A huge thank you to Challenge for making this happen!
Photos soon
Sunday, March 26, 2006
latest pics
Kids with Great Nanna Anderson
Ethan about to get mum
Ethan's 1st day of kinder. Erin's 1st day of school
Sports Day at kinder - The Don
Wednesday, March 22, 2006
Jack
During our time on 41north we met many other families and friends. Anna and Jack used to meet us on arrival and vice versa. We weren't on the ward much with out each other. Ethan and Jack were kept apart on many occasions due to the risks of cross infection but they would talk and play games through the little isolation windows. Erin and Adele soon found Jack's room and if I couldn't find them, I knew they would be in room 4 playing with Jack and trying to help Anna. Erin formed a special bond with both Jack and Anna. She loved going to hospital to see them and would be upset if they were on leave. We have so many wonderful memories of hospital thanks to them. Erin was over the moon when Anna asked her to go to the zoo with them. She had a great day. Anna and I also became a great support for each other. We both had a nursing degree and a sick child. It was rare to find someone who knew and understood where I was coming from. Once Ethan had finished treatment Erin would still ask about Jack. Jack also left Monash but ventured on to the kids to have more treatment. The treatment involved meant he couldn't see other kids. This upset Erin but she was pleased every time an update came through especially one with photos. She was looking forward to catching up with him after his treatment. She had it all planned, a little party like Ethan and a big present. Sadly this never happened. After a huge battle Jack passed away on his 3rd birthday.
Our deepest sympathy goes to Anna, David and family. We are thinking of you alot.
Jack, we will always remember your beautiful smile. You have taught us a lot about life and living in such a short time. You are truly a star that shone brightly. We will miss you.......
Our deepest sympathy goes to Anna, David and family. We are thinking of you alot.
Jack, we will always remember your beautiful smile. You have taught us a lot about life and living in such a short time. You are truly a star that shone brightly. We will miss you.......
Thursday, March 16, 2006
grommets
Ethan had his ears examined a couple of weeks ago.
He was to fast after a light early morning breakfast (nothing after 7am) and arrive at the hospital at 11. We knew from previous anaesthetics that waking him to eat doesn't work. He is cranky and won't eat so we let him sleep for as long as possible. It was a very long day. We waited and waited. Ethan was climbing the walls looking for food. It was nearly 24hours since his last meal when they called for him.
The procedure itself didn't take too long and the back up ICU bed was not required! A grommet was inserted into the right ear drum. The left ear drum has a big hole in it so couldn't be done. They sucked away a pile of goo and he was commenced on antibiotic ear drops. They doubt if the hole in the left ear drum will heal. We are not too sure what this means to his overall hearing. We will find out more at his post op appointment.
He has taken to wearing the earplugs (blu tak) quite well. He knows they need to be inserted before he goes in water and they are not to be removed until he is told. We have had one very interesting morning where he wouldn't listen to me. I was so frustrated. I asked if his ears were painted on. He was trying to tell me something and was signing but I couldn't work it out. We were both getting frustrated and trying to sign to each other but nothing was getting through. It took a while but he got his point across, I hadn't told him to take the ear plugs out after his shower! After I had worked it out and the plugs removed he proceeded to tell me in no uncertain terms that I was useless thanks to some new signs he has learnt from poppy.
He has moved on from watching thomas, hi 5 and the wiggles to toy story, monsters inc and the lion king and yes he has memorized all the scenes!
He still remains chesty and we have increased his ventolin in accordance with this. It isn't getting any better but it isn't getting any worse either.
He was to fast after a light early morning breakfast (nothing after 7am) and arrive at the hospital at 11. We knew from previous anaesthetics that waking him to eat doesn't work. He is cranky and won't eat so we let him sleep for as long as possible. It was a very long day. We waited and waited. Ethan was climbing the walls looking for food. It was nearly 24hours since his last meal when they called for him.
The procedure itself didn't take too long and the back up ICU bed was not required! A grommet was inserted into the right ear drum. The left ear drum has a big hole in it so couldn't be done. They sucked away a pile of goo and he was commenced on antibiotic ear drops. They doubt if the hole in the left ear drum will heal. We are not too sure what this means to his overall hearing. We will find out more at his post op appointment.
He has taken to wearing the earplugs (blu tak) quite well. He knows they need to be inserted before he goes in water and they are not to be removed until he is told. We have had one very interesting morning where he wouldn't listen to me. I was so frustrated. I asked if his ears were painted on. He was trying to tell me something and was signing but I couldn't work it out. We were both getting frustrated and trying to sign to each other but nothing was getting through. It took a while but he got his point across, I hadn't told him to take the ear plugs out after his shower! After I had worked it out and the plugs removed he proceeded to tell me in no uncertain terms that I was useless thanks to some new signs he has learnt from poppy.
He has moved on from watching thomas, hi 5 and the wiggles to toy story, monsters inc and the lion king and yes he has memorized all the scenes!
He still remains chesty and we have increased his ventolin in accordance with this. It isn't getting any better but it isn't getting any worse either.
Tuesday, February 21, 2006
an update
The last month has been extremely busy for Ethan.
The family dynamics have changed with Erin starting school. This caused a power struggle between Ethan and Adele. Blood was spilt over who will be the new boss. To my surprise Ethan won the battle with only a few scars to show for his effort!
He is in the full swing of going to kinder 3 times a week and early education twice a week. This has been very tiring for him but he has managed well. To top it off we have been without a car, and I can now say he is over walking. He learnt to sign for the pram and bike trailer very early on.
Health wise he has been up and down. He had preadmission for the grommets. Yes a date has been set. The outcome from preadmission was he needed a hearing test prior to surgery, to get the OK from the cardiologist and to keep him well! All has been done other than the keeping well. He currently has another perforated ear drum and chest infection. He is on antibiotics with the plan for review Thursday. The hearing test showed moderate hearing loss. Not surprising with an ear canal full of discharge and the other ear full of fluid. A repeat hearing test will be carried out post grommets. They will isolate the ears to see if he has any permanent loss.
He has seen the cardiologist. Nothing surprising came from this. His oxygen sats are now 77%. He will be having a cardiac cath in the next couple of months. The results of this will be reported to the surgeons and we will go from there.
He has also seen the oncologist. The scans were clear. No signs of recurrence. The ultrasound showed some nodes were up but nothing for us to worry about.
photos soon...
The family dynamics have changed with Erin starting school. This caused a power struggle between Ethan and Adele. Blood was spilt over who will be the new boss. To my surprise Ethan won the battle with only a few scars to show for his effort!
He is in the full swing of going to kinder 3 times a week and early education twice a week. This has been very tiring for him but he has managed well. To top it off we have been without a car, and I can now say he is over walking. He learnt to sign for the pram and bike trailer very early on.
Health wise he has been up and down. He had preadmission for the grommets. Yes a date has been set. The outcome from preadmission was he needed a hearing test prior to surgery, to get the OK from the cardiologist and to keep him well! All has been done other than the keeping well. He currently has another perforated ear drum and chest infection. He is on antibiotics with the plan for review Thursday. The hearing test showed moderate hearing loss. Not surprising with an ear canal full of discharge and the other ear full of fluid. A repeat hearing test will be carried out post grommets. They will isolate the ears to see if he has any permanent loss.
He has seen the cardiologist. Nothing surprising came from this. His oxygen sats are now 77%. He will be having a cardiac cath in the next couple of months. The results of this will be reported to the surgeons and we will go from there.
He has also seen the oncologist. The scans were clear. No signs of recurrence. The ultrasound showed some nodes were up but nothing for us to worry about.
photos soon...
Monday, January 16, 2006
the big 4
Today Ethan turned four. He has had a good couple of days consisiting of his favourite things; a trip to Yarragon, bike riding, the rocket park, playing with his trains, spiderman, chips, McDonalds, pizza, lollies, and ice cream!
Thursday, January 12, 2006
christmas
Hi to all the regular viewers.
The lead up to christmas was great this year. The kids had a ball. The chest bug and asthma problems Ethan had at the start of December became worse just before christmas and I was starting to think he would need to be admitted. We had regular trips to the GP but no hospital ones! He was commenced on prednisolone to help the asthma and more antibiotics. This made things better but I felt he still wasn't 100%.
He managed to get through Christmas and the new year but then the temperatures started. He came down with another chest bug, a perforated ear drum yet again and his asthma flared up. So more antibiotics and more prednisolone. He has just finished both and is still not 100%. Not too sure what is happening with him. I am starting to think it is more to do with his cardiac situation. The cardiac appointment which was meant to be in Dec and was cancelled until Jan, and then Feb and then the end of Feb is now next week.
I know something is not quite right but to onlookers he is going great guns. So even though something isn't quite right there is a lot that is going great. He is happy, playful and learning new things everyday!
Photo's coming...
The lead up to christmas was great this year. The kids had a ball. The chest bug and asthma problems Ethan had at the start of December became worse just before christmas and I was starting to think he would need to be admitted. We had regular trips to the GP but no hospital ones! He was commenced on prednisolone to help the asthma and more antibiotics. This made things better but I felt he still wasn't 100%.
He managed to get through Christmas and the new year but then the temperatures started. He came down with another chest bug, a perforated ear drum yet again and his asthma flared up. So more antibiotics and more prednisolone. He has just finished both and is still not 100%. Not too sure what is happening with him. I am starting to think it is more to do with his cardiac situation. The cardiac appointment which was meant to be in Dec and was cancelled until Jan, and then Feb and then the end of Feb is now next week.
I know something is not quite right but to onlookers he is going great guns. So even though something isn't quite right there is a lot that is going great. He is happy, playful and learning new things everyday!
Photo's coming...
Subscribe to:
Posts (Atom)
