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Melissa, Roo, and Ellie
We have some happy news at our house. Seth's
Wed Sep 13, 2017 11:08pm

feeding tube was removed today! He hasn't had an aspiration pneumonia for 2 years and we haven't used the tube for meds or nutrition for exactly one year. The dr. had told us last winter that if Seth remained healthy until spring, his nutritional labs were normal, and he was eating normally we could talk about tube removal. I was really disappointed in April when the NP that saw us (scheduled to see the MD, but her schedule unexpectedly changed and the NP was seeing patients on our appointment day.) refused to remove the tube. I finally contacted the office this week and spoke with the nurse who is more familiar with Seth than the NP. The MD agreed that tube removal is reasonable at this point. Seth is a little distressed that his tummy is leaking at the tube site, but I keep talking to him about it and telling him how happy Pooh Bear is that the tube is gone. I think he's feeling better about it because he keeps giving me the thumbs up! Just thought I would share our happy news.

Roo and Ellie keep going into Seth's room to check on him which is unusual behavior. I really think they know when something is different with Seth or when he is distressed. Ellie even jumped onto his bed earlier this evening which is something she never does. She tried to lay down at Seth's feet, but he doesn't like for her to be on his bed so I told her down.

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