Day 456

Ava had a great night. I stayed all night and she slept wonderfully. Even after her vent kept popping off when she would stretch, she would go back to sleep. I spoke with cardiology who told me that her heart rate dropping was a vagal response and there is nothing we can do to stop it. She will hopefully outgrow it. We should just maybe start bagging a bit earlier. Ava also got her IVIG (immunoglobins) this afternoon so she will have a good boost for her immune system. I also need to call and reschedule all of her doctor appointments.

I am still dealing with the whole gastric juices being drained and the rumors that we aren't doing what we were supposed to be doing at home. Ava did have rotavirus and she was set to vent months before going home (of course if some of her nurses were putting her to drain and not telling us, there isn't much consistency). I'm also working with the discharge planner on that floor to come up with something to drain Ava's gastric juices into something that VNA can provide for us and not be spilled. She told me that they don't see kids discharged with gastric juices draining and that is why they don't have any materials to help with it. She also told me that she was going to let the doctors know that I don't want to do it and I said no, I'm not trying to mess with it, especially with Lung Centers instructions. It does concern me that this is such an issue and why would we be doing it with Ava and no other child has it done when they go home? It is disgusting and not clean to let tummy acid drain out and get all over the place. It dumps every day at the hospital.

The pediatrician is speaking with the doctor out of Strong so we can get it figured out. I am utterly frustrated with the chaos, especially since Lung Center keeps lecturing me not to change anything about Ava's care. They perceive this to be the situation at home because of whatever they have been told by the prior nurses. I am having to do such damage control and it's so stressful. I really wish people would realize the problems they create before speaking, especially without having concrete evidence.

Thanking God for a good night and praying that her tummy situation is figured out and that Ava can stay home with no problems...