After meeting with the Doctors our PLAN for now is: wean her off the nitric if possible lowering by 1 level every 4 hours if that works she should be off late Saturday sometime. Then she can try to wean off CPAP after shes off the nitric and hopefully go back to just a nasal cannula. They want her to get well enough to come out of PICU and go back to the floor to be monitored until she is ready to go home. Then they want us to make the trip to Cinncinati for evaluation and another CT Scan for the specialist in the lung disease to check her out and possibly see someone else to evaluate her pulmonary hypertension. I forgot to mention earlier that today marks her 1 month stay in the hospital (again). Even though the past month has been unbelievably hard on all of us, I am grateful that at least we now have a diagnosis for her problems and are working towards treatment. She has been through so much and continues to show us just how much of a fighter she is!! Her personality is really starting to show, the nurses say that she is spoiled, she cries out if she wakes up and no one is standing by her bed :)
And she wants you to hold her pacifier in her mouth for her, good thing that glow worm is a good prop for it.
We hope all of you know how grateful we are for your support, help, and concern. We still have a long road ahead of us!
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