Change of plans.. again. We were under the assumption that Lily could discharge as soon as she was weaned off her sedation meds and clonidine. The nurse practitioner with the esophageal and airway team told us today that unfortunately, Lily will need 2 more dilations, each a week apart.. And they don't want her to leave until after that. Because her esophagus is so "freshly" post op, they don't feel comfortable with anyone else doing her dilations. Even though the surgeons in GR are familiar with EA kids and dilations. The Boston team is very EA specialized, so I get it I guess. But it's still a hard pill to swallow knowing it will be another 2 weeks. Joe is going to fly home on Friday and we will figure out a new plan for the next couple weeks. I know she's in good hands, and I am grateful for her progress. Sorry if I seem ungrateful. I just miss Lily and can't wait for her to be home.
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Video chat with Lily :)
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| Cora loves to eat! |
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| Rose had her first s'more this week. She liked it :) |
Oh Heidi. I just can't wait until that beautiful girl is home with you.
ReplyDeleteHeidi and Joe we can’t wait for you guys to have your entire family under one roof again! Thankful for a caring team of physicians and nurses at Boston but understand the frustration and probably some tears that come with the news! So so many prayers!!!
ReplyDeleteNothing I've seen sounds ungrateful. Rather, what stands out is how graceful the two of you are. My heart continues to go out to your whole family.
ReplyDeleteAgreed with the comments above. You are allowed to feel frustrated and disappointed! Love you so much.
ReplyDeleteLove you too!
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