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CdlS-Kids is a group for parents and caregivers to share ideas,ask questions,share photos,& stories about their loved ones living with Cornelia de Lange Syndrome.

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 Featured CdlS Story-Ella's Touch

Friday, February 19, 2010

Getting Things Ready

Over the past week, Ella has been recovering from the surgery in which her dead intestines were removed.  Overall, she has made significant progress healing in such a short time.  There seems to be motility from her stomach to her colon, which means she doesn't have to have an ostomy bag or a drain in her abdomen.  Instead, she can just wear a diaper like any other normal baby.  She will keep her G-Tube, except it now has a "micky button" that allows us to open and close the tube.  The only reason we'll open it is to vent her stomach, basically the same thing as burping a baby.

She's off her morphine drip and seems to be doing okay. While she was on the morphine drip she was very lethargic and when she did wake up here eyes looked *crazy*.
Her abdomen is still healing, it's slightly red, but probably not infected.  The only tubes or lines left attached to her are her heart rate monitor, temperature monitor, and IV fluids going to her central line.

We are working with Duke and Cigna to get all the hospice / home health care set up, which has to be done before we can bring Ella home.  We'll spend several nights next week in a private hospital room with Ella, so we can get used to caring for her ourselves overnight, without the risk of having her already discharged from Duke and have something go wrong.

While Ella is in the ICN, since she is now on palliative care, all the old visitation rules no longer apply.  We brought Mya and Ethan up on Sunday, which was great for them.  They hadn't seen her since Christmas Day.
 Since we know our time with Ella is limited, earlier this week we took a trip to Montlawn Cemetery to see if we could find a spot next to Carson.  As it turns out, we can definitely get a spot next to Carson and possibly even share his plot with Ella.  The decision on what we do,depends on how much she grows between now and the end. As of now, we've purchased the second right to Carson's plot and we'll just wait to see if Ella grows enough to require the adjacent spot.
http://www.ellastouch.com/?spref=fb Link to original post.
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