This is my sweet boy.
He is looking so scary thin now. He's lost 5 pounds.
Josh isn't doing well. I am finally going to be brutally honest. He scares the crap out of me. And we have been through alot in his 5 years. But I am at a loss and feel so overwhelmed and feel like nobody cares. Meaning doctors. I think they all think I am exaggerating how bad things have gotten. But I haven't. I promise.
The colorectal clinic who managed the large intestine/colon problem and also performed his appendicostomy (ACE) procedure, told me on monday that Josh is too complex for them and they no longer can help him. They are turning him back over, to GI to fix everything, including his flushes. Sigh....not what a scared mama wants to hear.
But we will persevere and make it through this. I refuse to believe that there isn't a way to have his flushes work without him passing out, vomiting and having seizures.
We are going to try a small change in his flush.... switch out glycerin for Castile Soap. If that doesn't work... which I know it won't because the problems are bigger.... we will be admitted to Primary Children's to find out and get to the bottom of what's going on. I almost just want to head there now and say we won't leave until my sweet boy is doing better.....because at least the neuro on call for the hospital will HAVE to help us then.
It makes me nervous. And so very sad for me sweet boy.