Posted (Tina) in All Posts on June-4-2008

Today was low-key. While Josh went to work, Grandma and I spent more time unpacking and getting settled. Our main focus was Ella’s room. Although there is still cleaning to do, tonight is her first official night in her crib. Also, it is the first night that she will not be in the same room with us. It should be an interesting experience, especially if she wakes up or her cannulas become dislodged.

The Special Care Clinic at the Children’s Hospital called with the results of Ella’s lab work. Everything looked good, except her BUN is 18. If you remember, Dr. Kays likes for her BUN to be 20 or higher (on the dry side). When she was readmitted into the hospital after her NICU experience, her BUN was 12. Two days before she was readmitted it was 14, so it can move in the wrong direction quickly. Other times, her BUN has been as high as 29. When her BUN is lower, it means she is more wet and likely retaining some fluid.

The only change we made recently was giving her diluted apple juice throughout the day, per the pediatrician in Gainesville. We would make up 120ccs and offer it throughout the day. Sometimes she seemed to take the whole thing and other times only a part of it.

After discussing it with Josh, our plan is to cease giving her the extra fluid. After all, she has always been fluid restricted to 100ccs per kilo per day. From here, we plan to get labs in 2-3 weeks, so we can tell if that is the variable causing the potential lower BUN. We would have a better idea if we were still in Florida (we had an established base line for her), but since her oxygen has been increased significantly due to altitude, it is hard to tell.

Tomorrow, we are going to the Children’s Hospital for an echo and to meet Dr, Steve Abman, her pulmonologist. We are excited about meeting him in person.

Thank you for all the amazing support and prayers from everyone.