Lucy is requiring more oxygen and has more fluid in her lungs, so we're back in the hospital. She was admitted Wednesday and unfortunately we have made little progress. She is most likely going to be scheduled to get a gastrojejunostomy feeding tube. A GJ tube is radiologically inserted through a small incision in the abdomen into the stomach, one port in the stomach and the other threaded into the jejunum. Her medicine will be delivered to the stomach and feedings will still be continuous into the jejunum. This will help get the tape off of her face so we can smooch her sweet cheeks. Obviously, not going to fix most of her problems, but we will be able to deliver her medicine more effectively and not worry about how well they are being absorbed in the intestines. Eventually with time, we hope to get back to bolus feedings with just using the G tube.
Still the bigger questions are why she requires so much medication post-op to keep fluid from accumulating in and around her lungs. We continue to challenge the doctors as to what can be done for a better long-term solution. We'll keep everyone updated on how Lucy is during our hospital visit. Thanks for continually keeping her in your thoughts.
Happy Belated Down Syndrome Awareness Month
11 months ago
6 comments:
oh, no
really sorry to hear this - hadn't been paying attention, but will continue to check in through this blog
you guys are always in my thoughts
much love,
I've never posted a comment before but I have been quietly lurking, reading about your sweet Lucy.
You are in my thoughts and I hope Lucy is home soon.
You know, Lu, they only let the CUTEST girlies have TWO belly buttons.
We're hoping, hoping they get to the bottom of your fluid issues. You're pretty sweet...any consideration given to the possibility of it being syrup?
I'm so sorry your back in the hospital. Have they put a chest tube in to see what the fluid is? If its chylus fluid it may not go away on its own. Its very common after surgery to accidently nick the lymph system and they have to do surgery called a thoracic duct ligation and try and close it off. Its another surgery but it will help so much.
Oh sorry to hear that you are back in the hospital. Hopefully they can figure out where the fluid is coming from and why there is such a problem. Best wishes
We are praying for you all.
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