Avleigh's Journey

Avleigh’s tonsillectomy was much smoother than we could have imagined. She did amazing through the surgery, even with her blood disease, and made us feel like we worried over all these little things for nothing. She tolerated this surgery better than any other. She was content, actually even prefers to rest on her own than have us cuddle her. It’s like she went into surgery my baby and came out a big girl! We had a few small battles while in the hospital but nothing we couldn’t handle or give explanation to. We were discharged on day 3 post op and the first night was even great. Had to wake very frequently to stay on top of pain meds but we had it down pack and we were smooth sailing. That is until later last week when our journey got twisted around.

Day 4 into day 5 she began having intestinal issues. She stopped tolerating her feeds and her vomiting and retching increased. We not only had to slow down her feeds but also remove her formula from the equation all together. To ensure she kept hydrated we put her on pedialyte 24 hours a day and reduced her rate of her pump to a very low speed. Each day I’ve been trying to increase the speed and slowly reintroduce the formula. We were able to increase her speeds on the pedialyte alone, but we are still having trouble with her nutrients. She’s at a slow rate of half an ounce per hour on formula and she is now down 2 lbs in this week of recovery.

We’ve been working with her team of doctors and keeping a very close eye on her. They thankfully allowed us to remain home for now with specific plans to try to get her calorie intake up. If we aren’t successful in getting her feeding rate up, then she will be admitted where she can get her nutrients intravenously. We would then group back together to come up with another plan for her care. Please help us by praying for sweet Avleigh so that her feeds come back to her “normal” state.