11/23 - PM -- Tough Day

We had a pretty tough day -- it was made a bit better by some GREAT food from the Worths and a visit from Chrystopher and the Gillette's, but it was tough. There is a multitude of things that we are concerned about and the main thing is Emily's nutrition. We have been fighting for her to get better nutrition (food in the stomach), but our sense of urgency for her "good nutrition" just isn't shared by her Dr's here. It is very frustrating (maddening). We ALL want her to be successfully extubated, but if she is going to waste away in the process b/c of a lack of substantial nutrition and respiratory care there was no point taking her off the tube b/c we are going to take home a completely deteriorated little girl that will not have much longer to live -- the main reason we avoid taking her to hospitals the the first place. The medical staff at JH's has been genuinely concerned for Emily and her care, we believe that, but when it comes to weighing the risks and benefits of her total care we are just not on the same page and we are at the mercy of their orders in the end. We get talked to very often like parents that are just concerned and don't see the whole picture -- a grave misunderstanding of our knowledge and ability. We are constantly treated like we we are not concerned about the same things as the medical staff which is just not true. It's an uphill battle though. I don't know how much longer we can fight like this b/c all they have to do when they get tired of us, like a Respiratory Therapist (RT) did tonight, is call someone else to deal with us. An RT was called to deal with us this evening and he said "you SMA parents are the worst b/c you know the most!" It was a compliment and he said that he commends us for the job that we do. He talked things through with us and said not to give up b/c only we know Emily inside and out. We're so tired.