Our Little Ranger slept through the whole helicopter ride, thanks to a heated transport bed. This is such a relief after having to endure watching her scream and cry and turn blue for hours. She made it to CHOA just fine and is back in the cardiac step-down unit at Egleston campus for monitoring. When we arrived, she was already all snug in her crib and sleeping. The nurses here have a way of keeping the babes peaceful, for which I am very grateful. They fed her and were able to witness one of her fits of pain, tracking as her oxygen went down dramatically. They have her on the high-flow cannula, which is only keeping her up to about mid 80% saturation. This is a bit of a concern. If she sits at her normal low end without the help of the cannula, then that puts her dangerously low during times of distress, and also while eating/digesting. Knowing that eating by mouth is causing the de-saturation, they are going to give her an NG tube for now to keep her calm, oxygenated and allow her heart to rest. While this is understandable, it is frustrating to see her back with a tube after all that hard work to be able to eat independently. They have taken a chest x-ray to make sure there is no backflow milk in that area, considering that she sometimes coughs while eating. They will be coming in anytime now to do another echocardiogram on her heart and will give is a detailed update sometime this weekend. They are also going to further study the abdominal scans taken in Columbus just to make sure nothing was missed. It looks like we will be here at least until Monday. After all the tests are done and reviewed, they will be making decisions about whether to keep her on oxygen or do surgery, or perhaps do something else. I am praying that whatever they do, that it helps buy her more time before she needs the big open heart surgeries. We will keep you posted.
Posted on: Sat, 23 Aug 2014 12:34:49 +0000
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