In just under month Lucy could be tube free for the first time in her life. In just under month Lucy could no longer be machine dependent for some of her nutrition. In just under month I may no longer have to sew loops onto her shirts. Yes, we are gearing up for another NG tube trial. Our last trial was seven months ago. Lucy did better than expected, but by day three she was crashing and burning. She did not have the stamina to intake all calories needed orally. We placed the tube back on day four and started focusing on her drinking. In the last two months we have decreased her tube feeding from four feeds of 190 mL (six ounces) to three feeds of 160 mL (5 ounces) each. As we have decreased the tube feeding we have seen her drinking increase from 30 mL per day to almost 150 mL. In the next three weeks we will look to decrease another 60 mL (2 ounces) each week in hopes that when we pull the tube she will hardly be dependent on her tube feeding. The official date is October 30th. I can't wait to see this face again! And the plus is we'll get to dress up for Halloween and take pictures with no tube on her face. It really is the little things!
The last benefit doing the trial on Oct. 30th is we have a cardiology appointment the following Thursday. If she does good, we can go to the appointment and have Dr. Husayni take a look and make sure we are clear to continue a tube free life. If the trial doesn't go well, we will discuss g-tube surgery at the appointment. All prayers welcome for a successful trial. I should probably add prayers for less crying from mom as well!
Other than that we have just been doing normal things like play dates (with BFF Jack):
The Advocate cardiac picnic (she also rode the ponies, but I don't have a picture of that)
She got this bear from the picnic and absolutely loves it!
And the zoo
and of course hair styling.....what's a girl to do without pigtails.
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