I don’t know which one is more difficult to deal with the part where he is mentally gone – incoherent – unable to “get” where he is, and who is with him – or the part where he is so violent that it actually requires either four adults or retraints to keep him safe. Again this is a function beyond his control and while sedation works wonders, with his ammonia being up it isn’t the best solution because we can’t use it as a baseline for behavior at this point indicating normal levels.

It breaks my heart sitting here, watching him, unable to truly comprehend what is happening. I can explain to him why until I am blue in the face – and he will not understand what I am saying. He understands the words – he doesn’t comprehend the meaning! Nothing will distract him to be nice, gentle and good – I can’t trust a hug because he is quick with his teeth.

I imagine how easy it is to be judged at the moment for allowing the doctors and nurses to restrain my child. Realize this, however, that this is for his safety. He can pull his IV out, he can bite the line – he can jump off this bed – run into walls as well as kick, claw, bite and scream at everything and everyone. I certainly don’t wish my son to be restrained – but I certainly want him safe. The ammonia is elevated and this is what it can do. It messes with his brain every single time – and every single time it is elevated he suffers a little more (or some) damage.

Again I feel like he is slipping away from me – underneath all that care he is given – slowly but surely I am loosing him – but I have to believe that he is a fighter – he will not go down easy – The Angel of Death will just have to wait a bit longer!

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  1. I’m so sorry that your world is difficult right now and that of your son’s. I prayed as I read through your blog that you would not feel alone in your struggle and know there is a blessing around every curve so keep your eyes open for the possibilities.

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