Finally a quiet day

Today was a very quiet day, thank goodness. Last night Jax cardiologist called because my doc had called him and said that no one told me what was going on before we went home. He said he went down and looked at the CT scan with the radiologist. He doesn't think there is an active clot in his SVC. He thinks that it is all from old clots.
That's all I needed to know. I didn't feel comfortable knowing my baby was clotting on blood thinners. That is so dangerous. The other thing I wanted to know is how safe it was that his SVC was almost completely blocked. Yah there are a lot of collaterals going around it, but is that really safe, and he said it was ok, that some of the collaterals were pretty big.
Also the palliative care team that follows Jax at the hospital called today after they also found out what happened. (Isn't my pediatrician great?) She was horrified at what happened. She told me that she wished that I would have called them. I said I was so angry I just needed to get away from that place. She totally understood. But all the doc's involved are going to know what happened and that once again we are pissed at the care our baby recieved.

Besides the phone calls, I cleaned my house today from weeks of neglect. Jax also enjoyed a long bath in his own bath tub.

I also did some blankie shopping. That always puts me in a good mood. Picking out blankies for very special kids.

By the way, Phenny your blankie is on its way!!

Jax blankie blog is almost up. It has a name, but not a face yet. In the next couple of days you will be able to go there and fill out a request for a blankie. I'm very excited about that. For now, just leave me a message with your childs age, sex, and diagnosis. And make sure you let me know what kind of things they like, and an email address to get back to you.

Have a good night friends.