Thought I'd let you know what we are doing right now. I posted this on our mito forum and thought that I'd do the same here since we caused quite a stir in the neighborhood this morning. We are currently waiting for labs to come back. I'll post more later...
We have experienced what I believe to be the perfect storm. Yesterday we were out and about most of the day which meant no long nap for our excessive sleeper. Then last night sometime during the night her feeding set came disconnected form her g-tube, we fed the bed and not the baby, that hasn't happen for us in a while. Not sure how long she went without food, I checked on her last when I went to bed at 10 pm and didn't notice any problems. This morning she woke up at 8:30am soaking wet and smelling of vomit and Elecare. After bathing her I gave her a bolus feed of 40 ml of her Elecare, she normally doesn't tolerate a bolus so I had to be careful how much and how fast it went in. She burped and hiccuped when I did it but did not throw up, thank goodness. I then started her at her normal feed rate of 33 ml/hr and decided to take her and her sister for a walk. While out walking Lucy became extremely floppy and distant, she could not hold her head up, she kept falling forward. My neighbor called 911 and we were brought to the hospital where they connected her to D10 solution and tried to draw labs. She is a difficult stick but it's even worse when she is dehydrated, we have not been successful in getting all of the labs yet. We have an emergency protocol letter that outlines what the er needs to do in case of metabolic crisis. We are doing what it says and sitting her keeping a close eye on our little Lucy.
We have experienced what I believe to be the perfect storm. Yesterday we were out and about most of the day which meant no long nap for our excessive sleeper. Then last night sometime during the night her feeding set came disconnected form her g-tube, we fed the bed and not the baby, that hasn't happen for us in a while. Not sure how long she went without food, I checked on her last when I went to bed at 10 pm and didn't notice any problems. This morning she woke up at 8:30am soaking wet and smelling of vomit and Elecare. After bathing her I gave her a bolus feed of 40 ml of her Elecare, she normally doesn't tolerate a bolus so I had to be careful how much and how fast it went in. She burped and hiccuped when I did it but did not throw up, thank goodness. I then started her at her normal feed rate of 33 ml/hr and decided to take her and her sister for a walk. While out walking Lucy became extremely floppy and distant, she could not hold her head up, she kept falling forward. My neighbor called 911 and we were brought to the hospital where they connected her to D10 solution and tried to draw labs. She is a difficult stick but it's even worse when she is dehydrated, we have not been successful in getting all of the labs yet. We have an emergency protocol letter that outlines what the er needs to do in case of metabolic crisis. We are doing what it says and sitting her keeping a close eye on our little Lucy.
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