So, what has been on my mind lately???
Opening wounds in his groin area.
Always on oxygen. When his cheeks are really red that means that he's having trouble so we need to get him on oxygen.
I can't lift him anymore because of my own back problems.
Can't walk without assistance anymore, but tries to because he wants to be as independent as he can be. We are just worried about when he tries and then falls because he's just too weak.
His skin is so stretched out and thin in places because of the steroids that he's on. I'm scared that more areas will rip open and I've heard that it takes a while to heal.
He cries out of the blue and asks about death and heaven. This is a daily occurrence now. I know he's scared of being separated from us and scared of the unknown. He doesn't want to be alone and he doesn't want us, me in particular to be sad. We've been reading him lots of books about death and heaven and hope that it helps to calm him and reassure him. It's been rough because at times, even I don't know what I believe anymore.
He chokes on more and more things, which worries me.
The big question now is when to stop the steroid. Steroid side effects VS. Benefits of steroids. I just don't know how much it's helping. It could be helping him in his ability to still eat, speak, move, walk, not have headaches, etc. On the other hand, the steroids cause massive weight gain in such a short time that the areas of the skin can't handle it and stretch marks can split wide open. It also makes them more irritable and angry with other people. It really is an evil drug. I just don't know what to do. I know we'll talk with Ollie about it since we are always up front and honest with him about everything. We'll see.
Who wants to even begin to think about this at any age, much less for a child that hasn't even begun to really live their life yet. It isn't right. It makes me sick just thinking about having to find a funeral home and pick out a casket and burial plot. I don't even know what all goes into planning a funeral anyways. I'm completely clueless and numb at this point, but I know we need to get things planned before Ollie passes because then I will be COMPLETELY useless and wrought with too many emotions to do anything. I really wish I could be at peace and find some shred of strength. I just want to scream. I want to plan some special things for it, but don't know what yet. I'll have to think about it like I'm planning a party. A celebration for Oliver I guess. I don't know... *sigh*
IN HOME CARE VS. Hospice House or inpatient Hospital care
Right now we have nurses coming into our home once a week to check Ollie's vitals. I'm not a nurse, but there are some things that I know to possibly expect to see in Oliver when the time draws near. Thank goodness for the DIPG Yahoo support group where I can ask questions and get real answers from other parents who have been through similar things... been through a similar hell at times. I just want his needs and wants met. For him to be comfortable and pain free in the end. I just don't know how much more I can take, seeing him failing so much... just deteriorating daily. It makes me sick.