Spoke too soon

So I posted that Tuesday was uneventful. And it was, but by 1am Wednesday things had changed. They had increased his nisiritide for a second time and he wasn't having it. He vasodialted (blood was hanging out in his arms and legs more) thus his glenn circulation wasn't getting good enough blood flow. They did a blood gas and could tell he was in distress even though he wasn't showing it. He was just lethargic and not responding to their ususal torture tactics. They turned off the nisiritide and he began to turn around.

Greg and I both slept at home last night. Greg had left Ethan around 10pm and said he looked good (that was before they increased his med). So at 3am my phone rang. I flew up to answer it. And yes, I can't go to bed at my own home with out having my cell and home phone right next to me. It was a better conversation that it could have been. . . but it still started with "Heidi, this is Dr. Underwood. About 1am. . ." and she proceeds to tell the story. We talked for quite a while. She insisted I didn't need to come. I thought it would be better if I tried to get some more sleep and come in after I got my kids off. I was wrong. I couldn't sleep and I was anxious to get my kids off. And when I got here he was clinically fine, but still looked crappy. Plus they had to sedate him to do another new art line. So as you can guess. . . I had a breakdown.

The docs and nurses rallied around and apologized and said don't give up on Ethan (same pep talk my wonderful husband gives me when I am losing it) . He has been slowly but surely progresssing. They said that last nights event was completely their fault. They shouldn't have increased the nesiritide that much. They knew it could cause that effect. They said it was not a significant setback and he was looking really good (not). However, within a few hours he did start looking better and by this evening he was looking great. I sat and played with him and he interacted with me so well.

Ethan was grabbing at things, chewing on his thumb (he will for sure have his 2 bottom teeth before Friday), and back to giving dirty looks to the nurses every time they assess him and push on him. That's my boy! He is known for the dirty looks he gives them. He continues to show so much expression through those beautiful slate blue eyes of his. I love this little boy, I just have such a hard time watching him struggle. I can handle all the swelling and issues in the world if he is just interacting and acting "himself".
Love-
Heidi