So Gianna is being weaned off her morphine and then her versa (sedative) and has already been completely taken off of her paralytic. She is also being weaned off of her ventilator and is most likely being extubated tomorrow if all continues to go well. Right now she is more alert and is moving around. She opens her eyes, tries to cry sometimes, moves her legs hands arms etc. She can squeeze your finger and responds to your voice trying to comfort her. Jess she has been staring at your balloons...I think it keeps her entertained and distracted from the tube down her throat! Once she is extubated we get to hold her! I CAN'T WAIT!!!!
So the plan is to take off that mechanism tonight and replace it with a new one...new glue etc so that it sticks better. They aren't going to staple it down or put those "stake" like anchors in it either. They are going to suture the "laces" into the duo derm not her skin and that's how there will be some compression. This will all happen tonight.
Tomorrow after she is extubated she will be moved to 10 east where she was before and they will help weaned her from her medications. Dr. Buchmiller is going to keep us here if that's what we'd prefer to do, which it is. We could probably manage the next step of compressions with a girdle like thing at home, but our mindsets are to be here and get this thing closed completely so she said we can manage it all here.
So the next step after we get her omphalocele to skin level will be to put on an ace bandage material girdle that will velcro across the omphalocele to keep it compressed. After the membrane around the omphalocele has really toughened to Dr. Buchmiller's liking she will add some sort of material (she held up a diaper as an example, not that its going to be a diaper) that she will put under the girdle to push everything in even further giving Dr. Buchmiller the optimal room to stretch and pull the skin and fascia over at final surgery time.
So one day at a time. She thinks weaning her from her medication and getting the omphalocele to skin level will probably take another week. Then we'll go from there. She'll also want to eventually reintroduce her to formula and normal feeding to make even more room in her abdominal cavity.
This was a really good meeting because we were afraid they were sending us home and we would have to come back and initiate back into "hospital life." Our mindset is hospital and final surgery and by going home it's like taking steps backwards mentally and emotionally for us.
I asked if I needed to reserve more time at Yawkey which I have reserved into the middle of October and she said no. She thinks two months in enough time to accomplish what she needs to accomplish. So that sort of gives us a very general time line as to how long this will take us.
Please continue to keep us in your prayers...it's definitely a roller coaster ride!
Here is what the omphalocele looks like now
Love, Dan Kaite and Gianna
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