Jude's tone, the great doctor, and the ultimate check in

Jude had a good day with his nurse but a not so great night with mom. He was asleep in his wheelchair when I got home and he woke up about 7pm. By 7:15pm Jude was in a full toned out attack. I gave him Valium and then took a video for the doctors. This is how miserable he is. Imagine your whole body locked into place.

Jude really didn't seem to fully recover this time. His heart rate was good, his oxygen was decent, but his tone never truly recovered. That can be difficult to explain to a medical professional. " Hey I know your fancy equipment shows Jude is normal, but I am pretty sure his perfect ballet pointe of his toe would suggest otherwise". Our adorable neighbor said Jude had "great form".

Around 9pm Jude went into a full toned out mode again.......but with the help of our neighbor we could get him to laugh. So we gave him his Clauzepam (klonnopin) a bit early. After all that medication I was worried about giving another dose of oral Baclofen. I will check with the doctor if the mixture of medication so close together is okay.

Sometimes people question the purpose of my blog. I do this for therapy, to let others know about our journey who may be embarking down the same path, and so I can learn. Sometimes I get advice I shouldn't, but sometimes I get great advice. A blogger friend with a daughter similar to Jude has given some great advice that I have actually taken to Jude's doctors. It may not seem like I listen to comments on here, but I promise I do. In fact today my husband acknowledged that the one person that seemed to be spot on was her. So with her advice we will be having specific testing this weekend.

I did hear from Jude's primary neurologist in Dallas and GOD I LOVE THAT DOCTOR! He is fabulous. Our conversation went like this....

Me: Hello
Dr: Hey this is Dr -----
Me: Hi How are you?
Dr: Eh I have been better. It's been a crazy day. I am pretty sure everyone is going to hell in a hand basket I have three admits and well it's been a bad day. So do I need to check in Jude too (LOVE he has humor)
Me: Funny you should ask.......it seems that is where Jude is heading
Dr: Oh Lord. Ok what's going on
I explain
Dr: I think you have some good leads here. This is either neurological which I doubt since the tone situation you are mentioning can be lengthy or we have the situation your other doctor suggested. I know your situation at work and I know it's important to try to do things on the weekend. I would suggest you check into Cook's like they suggested. If they don't find anything then you come here on a Saturday. I will make the time to fit Jude in to figure out if this is new seizure activity. We will figure this out but I understand this is NOT Jude.
I thanked him for listening to me and caring.
Dr: I just cannot do it on 9/5 because these people found an infected tooth and I need oral surgery.....can you believe that....like I have time....

I love the fact that this man is HUMAN! He kids around with us and he seems to truly care for Jude.

So it looks like we will probably check Jude in Thursday night. In addition to the prior issues I was having Jude threw up three times when I put him to bed. Poor little guy puked through his smiles and just looked completely innocent. I just changed his shirt again, hugged him, and tucked him in.  

Now comes the part of telling my boss I need Friday off..............