So since I am completely behind and slacking Ithought I would catch you all up. Following the last post, Lily had more and more problems keeping feeds down even after being off of the antibiotics. Docs ordered an abdominal x-ray and it was confirmed that she had a post-surgical ileus (which is basically a mass blocking her intestinal tract.) These occur from anesthesia, the slowing down of the body's functions and the high doses of medications, especially sedatives.They took her off of feeding completely and put
her back on IV drip for 24 hours. That seemed to do the trick. She was tolerating feeds fine after that. Once the feedings were going better we were able to take her for walks in the wagon and take her to the playrooms and hospital activities with big sis.
We attempted some oral feeding with no luck and knew if insurance would cover it we would be heading to the Children's Institute for the inpatient feeding program.
After a couple more days of upping the feeds and getting off almost all of the meds, Lily was doing fantastic. Her post surgical echos were exactly as expected. She has some Pulmonary insufficiency, but that is completely normal for a post Nikaidoh patient. Once we learned the feeding institute was excepted by the insurance, we made plans to arrive there on Monday. The hospital had to keep her until then, as she had to be transferred via ambulance.
This meant we had another weekend past when she was ready to be discharged. We were able to take her off all of the monitors except at night. She traveled to the cafeteria with us and we would hook her back up at bedtime. My friend Jen and her family visited us (8 hours away mind you... a true friend for sure) and we were able to take Lily on a day's leave to the Pittsburgh Zoo. It was so nice to spend some family time together outside of the hospital.
On Monday morning she was checked over one last time, the transfer team arrived to take us to the Institute to start her intense feeding therapy, and off we went. We hoped to get as much therapy in before her post surgical checkup with Dr. Rockstar and his team, scheduled two weeks from her discharge date.
