PICU day 4

Today was a good day, he actually surprised the heck out of me! When I first got there I was quite alarmed because he was even puffier than he was yesterday, even though he had been off IV fluid for over 24 hours. It scared me that it was heart failure causing more fluid back up. His x-ray was horrible this morning as well, they ordered chest cpt 3 times a day as well as more diuretics to pull off that fluid. The funny thing is, as puffy as he was, his lungs were holding up quite well. He wasn't really requiring any more support. They did an echo this afternoon that showed worsening pulmonary hypertension, and he was finally started on viagra!!! This episode was a blessing in disguise. He is finally getting the support for his lungs that cardiology wasn't doing. I'm feeling better about the vent, feeling cautiously optimistic that it will help him get stronger. We were really feeling that our time with Jax was getting short. This event was bad. He dropped his blood pressures and his heart needed continuous IV drugs to make it pump effectively. Tonight I'm feeling better about the vent actually helping, and not just postponing the inevitable. Although I'm still nervous about it. Most kids that need vents need them early on. When you slowly need the vent, it usually means your health is going downhill. One day at a time here!
The plan now is to get him on vent settings to go home with. The RT today said he thought vent training was 10 days! No way am I staying there 10 days to learn this machine. Give me the manual and show me how to work it and lets go! So I don't know how much longer we are here, it all depends on how getting this home vent goes!
Wish us luck!