So today was Janessa's monthly ICARE visit, usually these visits are full of doctors, nurses, therapists, and social workers coming in and discussing issues about Janessa, and regulating TPN. Well today, the TPN numbers weren't even touched, and Janessa has gained weight from the last monthly check up, and continues to do so at a decent pace, which is good, and the doctors are happy about it.
Well the point being the doctors are amazed that with her condition being of MMIHS that is he able to tolerate her feeds so well, and that we KEEP increasing them every month. Right now Janessa is at a 3 ounce drink every 3 hours with snacks in between, which is incredible considering at birth she was only eating 2ccs of formula every four hours. With this being mentioned her doctor today told us that she might have been misdiagnosed with another motility disorder, but we would have to wait and see how much she will be able to tolerate in the future. It was mentioned if she gains more weight next month they will drop her TPN to 18 hours a day(which would be wonderful) and continue to do so depending on how much she tolerates, and her weight gain in comparison with it. He mentioned that she may actually be able to come off of TPN and not need a small bowel transplant.
With this fact, Janessa also will be dropped on the transplant list since her liver function is so well, she has tons of access space, she has been infection free, and she is tolerating feeds well. :) I can't even say how lucky I am to have such a happy, and intelligent baby.
No comments:
Post a Comment