Wednesday update

This morning I woke up super cranky, and ready to beat anyone that got in my way. I thought the attending we had was one that I clash with horribly! Lets just say he doesn't listen to me, and he is a know it all. Not good with a medical mommy. I planned on fighting about the 3 days of vent training. That didn't work, so the plan is we go home Friday, after our last vent class. I can't believe how horrible I'm sleeping at night. I've never slept this bad when Jax has been in the hospital. My eyes have been burning all day!
I also forgot my camera, so no pictures either, sorry. Not much news on the venous congestion. When he is back to baseline, they will do a scan, it has a weird name that I can't remember, and look at his veins in his chest.
I about had a heart attack today as well. I was having lunch in the cafeteria with a couple of friends. Jax had been having weird heart rates all morning, they were coming up to do a EKG on him. While we were eating lunch a code was called. I froze, when they said CSU, I was ready to bolt out of my chair! But it was a different room.
Sheesh, talk about heart attack! It would be just like Jax to do that to me! And actually it was a little down syndrome baby. She had heart surgery, but she is ok, after they got to the ICU she was doing fine!
We should be submitted tomorrow. Keep your fingers crossed. I've been so consumed by Jax that I haven't really thought about it. Now I just want to go get her, so we can be a family, before Jax gets bad again!
It may be hard to understand through a blog, but Jax is one sick baby! He has multiple things working against him right now. Not only does he have heart and lung problems, but this clotting disorder on top of that is a bad combination, and its only a matter of time before something fatal happens! I don't want to be a pessimist, but I have to be a realist. I have to make our family prepared. This time was bad! We avoided a code situation only because he had a trach, so we didn't have to wait until he had full respiratory failure and intubate him. But he had heart failure, requiring strong drugs to make his heart pump, and the vent to breathe for him. The vent loses all scary meaning when you have it at home too. But it really is a bad thing to need that just to breathe. I just want to get him home so we can do some fun summer stuff before the boys go back to school! We have a Lagoon day with our down syndrome group next Tuesday. That will be a lot of fun!