Lu had her appointment with Dr. G yesterday. There wasn't a whole lot to be excited about, other than that her weight has remained steady. She hasn't lost a pound despite being on a fraction of her feedings for a while now.
We narrowly escaped another admission. Lu's tube site still has a a mass just above it and redness streaking off of it. Its hard to be sure what is going on, but the history of cellulitus and the risk of infection were enough that our surgeon and Dr. G had to decide whether or not to admit us. They let us slide with some antibiotics to take home and a list of reasons we are to report to the ER if there is a change.
The site looked pretty angry by bedtime tonight, but it may have been her abdomen bloating as usual that caused it to seem larger. I am waiting to see what is looks like by the morning.
Other than that we are holding steady while she finishes yet another course of antibiotics.
Her tube site continues to leak badly during feedings, she is regularly complaining of stomach pain, then theres the bloating, headaches, diarrhea, and crankiness. Dr. G reassured us we need to give her more time to bounce back and not convince ourselves her surgery was a mistake. He anticipated a complicated recovery. He still feels confident that in 6 months we will be back in a happy place. In the meantime, it feels like ugliness all around.
A positive sign is that through most of this Lucy has remained functional. She still plays and runs around. She is sometimes too sick to do more than lay around, but other times she behaves perfectly normal despite everything. Thats certainly something to be thankful for! Kids seem to adapt to just about anything and Lu hasn't been the exception.
Crossing our fingers we can stay home this week!
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