Which brings us up to our doctor....he was just here a few minutes ago, and I think we have a new plan. Although, it is subject to change at any time, remember?! By the way, I know I have said it before, but we are truly blessed with some of the best doctors in the area! Dr. Darby walked in, sat down in the recliner and said "let's figure this out together." He is just as determined to come up with a solution to this problem as we are! We are so grateful for the doctors, residents, nurses and other staff here and for the way that they truly care for each patient. We have never felt like just another chart number or bed number. It is a great feeling especially when you have a child as medically complicated as Rebekah!
So, all of that to get to our new plan. It seems that Rebekah's problems are coming from either the g-tube itself or the Ellecare formula that we are using in the g-tube. Yes, she has c. diff. and is being treated for that, but Dr. Darby seems to think that if the c. diff. were bothering her digestive tract, then she would have the same reaction to breast milk going into her stomach by mouth as she has when Ellecare goes into her stomach through the g-tube. After a lot of discussion, we (Dr. Darby actually, I just nodded my head and agreed!) decided to switch things up a little to try to eliminate one or the other as a problem. So, unless the plan changes, Rebekah is going to get a little bit of Ellecare by mouth this afternoon to see what happens. She will also get a little bit of breast milk in her g-tube to see what happens there as well. If she tolerates the Ellecare by mouth, we can assume that the problems lie with her g-tube. If she tolerates the breast milk in the g-tube, we will assume that the problem is the Ellecare. If she tolerates both, I'm going to throw my hands in the air and scream! Okay, not really....maybe. Hopefully one of those trials will give us some information to come up with a solution we can work with.
Several weeks ago this would not have been too big of a deal because we were not using the g-tube prior to Rebekah's last hospital stay. However, since Dr. Darby put Rebekah on continuous nighttime feeding with the g-tube, she has gained a pound and a half. The continuous feeding was really working well and allowing Rebekah to grow faster than she ever has in her little life! We really need to find a solution that will allow us to use the g-tube with a higher calorie formula to get the extra nutrition to our little girl.
As I said, that is the current plan, and always subject to change. Dr. Darby is still going to consult with the GI (gastroenterology) doctors to see what other ideas they might have, so he may decide to do something differently after talking with them. I will update later to let everyone know how things are going!
Nancy
2 comments:
Hi there. Rebekah is a beauty! Keeping her in my prayers.
That's what we all want to know. Where did that blond hair come from? Same place as the blue eyes, I guess. She's the only one with those too!
It's nice to meet you!
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