Well, yesterday Lily had her EGD. They do an X-ray, and also put a scope down her esophagus to measure the inner diameter of the esophagus. Her’s measured about 3.5 and a normal baby her size it should be 10 or 11. They said around 60 or 70% of the time after the Foker process kids will need some dilation of the esophagus at the connection point. I talked to the surgeon who did her Foker and he said 3 or 4 is about the average they see, so it’s not concerning.
As of yesterday she was officially weaned off her morphine drip, and they started weaning her off the clonadine. She was fussing yesterday after the EGD so they ended up giving her a morphine bump. Apparently they gave her another bump last night.
We’re working on getting her eating schedule up to speed. Adjusting the amount she gets and how often she gets it, through her g-tube.
Her pic line is supposed to be coming out this afternoon, which just leaves her vital leads and her g-tube. Least amount of accessories she’s had in quite a while!
It’s been a very frustrating couple days. The general fussiness due to weaning off the medications. The fact that it seems like the general expectation is that we will just always/only be a patient of BCH. “Oh, we’ll do that in a couple days. Oh, we’ll do this next week, then probably again the week after that. Oh, we’ll just take care of that when you’re here for the 3rd EGD in three weeks”. Um...yeah, I don’t live here and I’d really like to go home someday if that’s okay with you guys.
Other than that, Lily is doing really well. It’s just hard to be so close.. We both just need to go home. I’m really missing my other girls. Hoping she’ll be home before her 1st birthday! Ugh.
This is the extent of me being a tourist. Whatever is on my way to/from the hospital, or to/from wherever I get dinner 😉
Yay for begin weaned off morphine! Boo for all the change in expectations. :( It must be so hard going out there thinking you might be bringing her home, only to have this news slapped in your face. I wish they were better at setting expectations, so if it's going to be X number of weeks yet, you can steal yourself for it. Maybe they are unable to do that but...Anyways, sorry you are going through that.
ReplyDeleteSuch cute pictures of her, thank you for sharing with us. :) I especially love the one with her little tongue sticking out. She looks so snuggaly. :)
The second Boston picture looks pretty--do you know what the domed building is? Looks like a church in front of it?
Yeah, and this is the second time now that we thought we were bringing her home :( Some of it I think is out of their control, it’s just based on what happens or how Lily’s body responds to things. But I feel like they could do a better job at setting overall expectations.
DeleteShe loves to stick her tongue out like that 😆 It’s her thing I guess.
The building is “The Mother Church” in Christian Science Plaza
https://goo.gl/maps/PXS2EwQBHRrJSNz4A