Friday, March 26, 2010

fat guts

Ethan remains tired and continues to eat non stop. The increase in food with the side effects of the pump medication led to some serious constipation. He was having a lot of trouble sitting and pushing as he would fall asleep. An increase with the laxatives and 1L of prune juice has him running to the toilet every 5 mins, holding his bum yelling "poo poo"! It's actually very funny to watch. He's gone from one extreme to the other. Lucky Poppy Syd bought 50,000 rolls of toilet paper!!

His abdomen is very swollen. It looks like he has a beer pot. The needle site needs to be changed more often as the extra abdominal pressure blocks it. After the stuff up on Tuesday, I am now fully aware of the effects of this and can get on top of things early. The site itself isn't red, but the medication hasn't gone through. Once it is removed you can see the needle is flattened or bent from the pressure. Ethan still cries and gets upset with the needle site changes but today he thanked the nurse for helping him.

Ethan also has bad leg pain. His little legs are swollen and he has cankles. The added pressure in his legs as well as the extra couple of kilograms he is carrying is causing some horrific pain. Sometimes he just collapses to the floor holding them, but today he has started punching them and kicking his legs uncontrollably.

Ethan is more accepting of his condition now. When he first went into hospital he was very accepting, telling me he was sick and never going to get better. He made me ring people and tell them to come to the hospital as he was never going home. He then went through a stage of telling us he wasn't sick. He is now accepting of his condition again and is admitting he is very very sick. This is a tough thing to deal with. He can't speak with a counselor as they wouldn't understand him. Not that he would anyway. I have managed to have some pretty in depth conversations about death, dying, sleeping, heaven etc. No parent should ever have to go through that. It can really play with your head. I have had a lot of trouble keeping up to date socially as it seems everyone is either whining about nothing or bragging about life. It is tough to stay positive when everyone else is moving on and my life seems to be at its lowest point. But then I remember things could be worse.

I am looking forward to the next couple of weeks with the girls on school holidays but am also worried how they will manage seeing the ups and downs more often. We have had a lot of offers for sleep overs and play dates if the girls need to get out and about. They have also been invited to birthdays and have holiday activities planned but we need to be mindful they are not too far away or doing to much during their break. Our annual camping trip has been cancelled this year.


Sal Murgana said...

You are right Jo, no parent should ever have to go through what you are going through. Just know you have so much love and support from your family and friends. We all love you and your precious family. I thank my lucky stars that I met you and have your friendship. Thank you for keeping us updated with this Blog. We all know how hard it is to express what Ethan is going through. Give my love to all. Love Sal xxxx

Anonymous said...

Thanks for being so honest with your thoughts and feelings . It is a priviledge to be able to read them. All my love to you all love from Sandra Broadbent xxxx

Anonymous said...

I agree with Sal. No parent should have to go through what you guys are going through. Reading the blog reminds us to keep our life in perspective and be thankful for all that we have. You are always in our thoughts.


Anonymous said...

May you always have the strength to deal with the painful situations and the joy to smile at the love you all share.
Judi & Rob