Tuesday, February 02, 2010

heart disease progression

Ethan was excited about starting school. He had had a couple of months off so was ready to go back and see all his friends and teachers. Everything was ready; his lunch was made, bag was packed. But during the night he developed a temperature. I gave him some more panadol but it didn't seem to help. By the morning he was also in a lot of pain and his breathing was erratic. I decided to take him to Monash for IV antibiotics. I spoke to the Oncology team who admitted us into the Childrens Cancer Centre rather than waiting in emergency. They quickly did a chest xray to find his lungs showed no signs of pneumonia. This was not what I wanted to hear. He had chest pain, fever, fast breathing and coughing but his lungs were clear. The doctors informed me his heart disease had progressed and that they needed to insert a pump for pain relief. It was devastating. I always knew one day I would be told that and I had tried to prepare myself but no logic and understanding of his palliative condition could have stopped the aching I felt.

I wanted to ring Luke but I couldn't talk. I eventually built up the strength to mumble it's not good, it's his heart, come. By this stage Ethan wasn't moving, just laying there stiffly making a horrible breathing sound. A relaxant was added to his pump to help. During the admission Ethan also had some blood taken. The blood tests didn't show us anything. There was no underlying infection or inflammation.

The next few hours are a bit of a blur of pain control and crying. I wanted to ring people but couldn't. I didn't know what to say. There were questions to be answered and I didn't have the answers. Why should he have to suffer with this and why should the girls have to watch their brother die. I couldn't think of anything else. I eventually rang the grandparents. Not easy.

The next day I managed to start telling people but we still didn't know what and why. So we didn't know what to tell people. Since then we have had doctor meetings and doctor meetings, information and more information but it doesn't matter what they say, it sucks. We know there is nothing they can do to help other than pain control, we know it is getting worse and that one day he will die but there is still a big question mark as to how and when. No one knows.

We are all coping ok. It is harder to deal with when he is lying there not moving and crying but when he is break dancing on the floor and smacking the nurses on the arse, you have a big laugh.

We will be in hospital until the pain is under control.


Anonymous said...

Jo and Luke, thankyou for updating Ethan's blog - as hard as that must be. Hope Ethan's pain is being well managed now and that you are able to enjoy more of his antics - a small respite from the bigger picture. Stay strong! Our very best wishes, Joan and Andy

ema732 said...

Hey Jo and family.I can't beleive this i was in tears when i read this.My heart goes out to u all and i hope he pulls threw this as hes a strong little man.Give him a kiss from us and if there anything we can do please ring if its for the girls anything.Let me know if i'm able to go and have alittle visit would love to see him.Hold your head up high because u r wonderful parents.Well i'm crossing everything for u and Ethan get better very soon want to see u do the bum dance again lol how cute is he doing that.Take care guys and thinking of u all a make sure u give him a big kiss from us xoxoxoxoxox

Anonymous said...

Thinking of you guys - when this happens to such a wonderful boy and his family it is truly heartbreaking. Take care - Paul & Lou Grobler

Colin & Fiona said...

Thanks for the update Jo, we know that it's so hard to put it into writing. Please give Ethan a massive hug from us, so wish we could be there to give the rest of you a big hug too. Love always, Fi and Col xo

burkey & ann said...

hey hanleys
me & the Ann are thinking the best thoughts junior hanley and hoping for the best