The good, the bad, and the eye poking!

Things are really mixed with Jax right now.

He had a cardiology appointment a couple weeks ago. He did amazing! His heart looks fantastic! (for him) so good in fact that she is considering weaning his amlodipine. She wanted to think it over, because with him being so fragile, she doesn't want to rock the boat when he's doing so well. I haven't heard from her yet, so I'm wondering if she's decided not to try yet. We both contribute sea level to the big change. The only thing we have to watch is his VSD for signs that he is shunting a lot of blood. When his PH is high, it keeps the blood from shunting through the VSD. But with his PH doing well, he left heart will push blood through that hole into the right side.

Of course his heart and lungs doing so good is fantastic, since this is the biggest worry with him.

But neurologically, he isn't doing so hot.

I'm really praying that when we restart the diet on June 11, that a big change will happen. His neuro even told me its highly possible that his episodes are in fact seizures, but they are so deep in his brain that they don't show up on EEG. EEG's only read the surface of the brain.

But its not just the seizures, he's having other neurological changes.

The biggest thing, he is sticking his finger in his eye!

Its gotten so bad that he is starting to get a sore under his eye from his finger. The only thing I can do is put a no no on his arm. But that will just make him mad, and to me that is much worse. I can't explain or reason with him, because he can't comprehend any of it.

But this dang finger is in his eye 24/7!

Another thing is he goes into these fits that kind of look like he's having med withdrawls. It could even be looked at as a seizure. He freaks out, kicking his feet and waving his arms. He frantically grabs at his feeding extensions, and I've figured out that its Jax, and not faulty extensions like I originally thought was the problem!

See, his med port has been popping open for the last couple months. In the 6 years that we've had his tube, I've never had this problem. Another problem is his tubing from the feeding bag is getting pulled right out of the end that fits into his extensions! I was thinking a bad batch of feeding bags as well, until I saw him pulling and pulling on his tubes!

Again, the only thing that will help is a no no, but I wont put him through that. I just hope that restarting the diet will calm his little brain down a little bit, and we will all be happier campers!

*I've met some new friends in the last couple months, but been unable to add the blogs to my blogroll because of blogger issues! If you are a new follower, or I don't have your blog, please comment me you blog so we can add you!