I've used the metaphor that Ginny's recovery will be a long road. Along that road we'll have some bumps, and today was one of those little bumps. Ginny has improved a lot over the last week. She is stable and has shown us how she can be so resilient and so stubborn at the same time.
Ginny's been weened off of all but 3 medications - which she will stay on until after her surgery. The same goes for the 35% oxygen she is receiving from the ventilator. She could be receiving that oxygen without having a tube down her throat if she could just kick the nitric habit. She has been getting nitric oxide through her ventilator at 1 ppm since early late Sunday. We tried to get her all the way off the nitric yesterday evening, but she wasn't having any of that. We tried again tonight and were also unsuccessful. The respiratory techs say that going from 1 ppm to none is the hardest step. Rachel calls it baby crack. We will try again tomorrow to get her off the stuff. We've also increased her feedings to 20 cc every 3 hours. She's even gained a little weight.
Kicking the nitric habit will be a big step for her. Her pulmonary hypertension is largely under control. If we can get Ginny off the nitric, she will be able to come off the ventilator (extubated). We'll then be able to hold her and Rachel will be able to breastfeed her. After about a week of that kind of rest and relaxation, she should be ready for surgery. It all depends on getting her off the nitric oxide. If there is something you want to pray about, pray she can just say no to the NO.
We would like to give a huge thank you to everyone at Jones Edmunds that donated their vacation time so that I can spend this time with Ginny. At last count my co-workers had donated over 250 hours of vacation time to me. I am eternally grateful and can only hope that someday I will be able to pay it all back. I do hope to get back to the office soon - mostly because that will mean that Ginny is well on her way to a normal kid's life - but also because I'm afraid the atmosphere in "the shoe" has become all too pleasant in my absence.