we flew her to Boston. So sad that we've wasted all this time. So glad that we're here getting the best care for her.
Ari was on TPN (nutrition from IV) for over two months. With her surgery last Friday, they placed a gastric feeding tube (GJ tube) and started her on breastmilk Tuesday. She's finally getting some real food in her system. At this point, she is heavily sedated and is on paralytics. They will lift her off the paralytics Saturday morning but will put her back on them after her surgery next week when they start the Foker procedure with external tension. Being on paralytics and completely inactive, there is a chance that she could end up with bone fractures.
The nurses here are fabulous and are doing a great job keeping her comfortable. We're hoping that we don't run into anymore roadblocks and eveything from here on out goes smoothly. As soon as we know, we'll post the next surgery date. It is a moving target so we may not know until a few days before surgery number 6, the big one, happens.
Love,
Matt, Nina, JuneBug, and Ariana Warrior Princess
Thanks to Kalitta MedFlight for taking good care of Ari during her trip!!
2 comments:
Thanks for posting the pics of Ari's flight to Boston. Looks like she had the best of care! Hope everything went OK this morning with taking her out of the paralytics. Love you guys!
She's doing well! Her vital signs look good. She's comfortable and is enjoying some Mozart. :)
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