Ever seen one of these before???
No?? Then you are incredibly lucky. This is the plan for what we want to happen for Ethans end of life care and for medical treatments throughout his life.
We hope that we never have to use it but it's important to have it all written and recorded incase the time comes that we do need to use it.
Unfortunately children with life limiting disorders, means just that, a limited life. We have never been given a life expectancy with Ethan but we have been told that in order for him to live longer we need to keep him well and control the seizures.
We are all to aware that one prolonged seizure could take our precious boy and that always plays at the back of our minds. We work tirelessly with the health professionals to do all we can to get those seizures under control. Over the years we have been able to help the seizures in different ways. We won't ever totally eradicate them but we have found methods that work effectively to help seriously to reduce them. Ethans genetic disorder causes hard to control seizures and so obviously we've had a hard time controlling them.
As Ethan gets bigger he seems to spend a lot less time in hospital for stays. When he was younger we were forever in and out of hospital. We have been very fortunate that we can manage Ethans condition from home with a healthy balanced diet. We keep him away from lots but also let him be around small things that we have in our family because we know that he can handle them at the moment and build his immune system.
Having to plan my child's end of life plan and funeral is something I never thought I would have to do. It's something I really hope I don't have to do any time soon but I also need to plan and sort it all out now while I am in a good frame of mind and while Ethan is well. I do not want to be doing all of this at a time when it's needed.
The plan goes through our wishes for care for Ethan. Where we would like him to be for end of life care if possible. We have chosen the hospice as this is a place that has a special part of our life. Everyone knows us there and friends and family can visit and be with us and Ethan at such time.
The plan sets put how We would like medical procedures to be done. We would like full resus until a time we see that it's not working for Ethan. This plan is not set in stone. If at anytime during any process we as parents change our mind then the plan changes too. It's difficult to plan for situations you may never be in or know how you feel about until you are in them. Having an overall plan is best just to give some idea of what we would like to happen.
The plan goes through all the different things that could happen to Ethan, the most likely being a deterioration in his condition or going into epileptic status. There are so many options it really is overwhelming but at least we have the basics in place incase anything should happen.
My baby boy is my pride and joy. He's well and truly a mummys boy and to imagine a world without him chatting away to me and giving me snuggles is unbearable.