Monday – April 30, 2018

Hey everyone,

Thank you for all of the tremendous responses we received regarding our blog post on Friday. We continue to feel so blessed with the love and support from our friends and family.

Sitting here Monday afternoon, we are feeling pretty good with how the weekend went. Ava had a catheter in to help keep her perineum wound as dry as possible. She continued to have IV antibiotics, and finally caught up on some sleep. She is drinking her formula well, and beginning to eat pureed solid foods again. She is not able to eat in her high chair due to her wound, so she sits on our laps during feeding. We are learning her dietary restrictions with her ostomy, and continue to become educated on caring for the appliance.

Today’s biggest decision was whether or not Ava’s catheter should come out. Her specialists needed to discuss whether or not her wound was ready to have exposure to urine, and how it would heal. By late afternoon, it was decided the catheter would come out. It has been a busy day trialing dressing changes quite frequently (almost every 2 hours) every time she pees, to keep the wound as dry as possible. Her IV is also now out, leaving her quite content with no IV on her arm or catheter in. She is being monitored very closely, but continues to smile, giggle, and kick around in her crib. She continues to amaze us each day with her resilience to all of the procedures she continues to go through.

The plan over the next day (or two) is to monitor her wound, keeping it as dry as possible (without a catheter).

Ava is adjusting to her ostomy. She thinks it is a new “crinkle” toy to play with, but is learning its purpose. We are hoping to have a restful (dry) night, with this new busy schedule.

Love,

The Deley’s