The Tone Monster

Well the good news is the ER has NOT called today. Which means the blood culture hasn't grown anything yet and that is positive. I am not saying we won't hear from them, but it's looking more positive. Jude has a cardiology appointment next Thursday to have an Echo of his heart done. We should know more on that issue next week.

I came home today and Jude is really toned out again. He had Valium this morning, oral Baclofen this afternoon, and he is just so toned. His heart rate is so fast I can feel it pounding through his chest. Again it's either the lack of tone medication or maybe to much.

Here is a little video of how he looks. This is actually A LOT better than he was at the doctor on Monday. It's hard to explain to people that don't deal with tone. The best way I have found to describe it is it's similar to your joints locking in place and you are trying to break the pain from it. Like your finger locks and you are pushing your finger up to make it stop locking up. Make sense? I a sure a more educated therapist would have a better description.

I did get a response back to my letter and it was very nice! The doctor said she feels so bad about what Jude is going through. She did assure me she doesn't think the heart issue is an emergency but it does need to be seen. She assured us she is here to help in anyway.