Ellie looked even better today. She got 2 chest tubes out, the right chest tube is still draining quite a lot of chyle. They have stopped her feedings to see if that will help resolve the problem and it will take a few days to find out for sure. We were told by one doctor earlier on today that she is likely to have surgery on Monday or Tuesday because the fluid is not decreasing. Tonight we were told by another doctor that usually they give them a few days to a week on TPN or IV fluids to see if it will decrease before they even think of having it surgically corrected. I hope they will give her enough time to see if their own interventions will help before she has to go back to the operating room.
Tonight Ellie was weaned off the high flow cannula and put back on the regular flow at 2L. This is great for her because she does not like all of that air blowing in her nose and she is getting close to her baseline of 1L. Ellie is really losing a lot of muscle tone and I have noticed in the past few days how skinny she is getting. I especially noticed it when I held her fragile hands to give her a mani-pedi tonight. If they hadn't put socks on her hands she would have scratched her whole face up. She still has a lot of congestion but it gets a little better daily. Ellie's energy levels are increasing and she is generally awake and playful whenever we visit her. Mike was able to hold her for the first time in over 2 weeks tonight. Ellie settled in and was comfy in his arms and was even more comfortable after a good dose of lortab and then spitting up some phlegm on him.
Little steps of progress! I am happy that there are meds and tubes being removed instead of being put in. It must be so frustrating to think of the possibility of another surgery. I hope this little sweetheart can catch a break at some point. Come on! That's so cute that you gave her a mani/pedi, though! Hopefully you'll have lots more mommy/daughter bonding times at home really soon. Love you all.
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