Jun
04
    
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.



Lisa T on June 4th, 2008 at 10:35 pm #

What a sweet little butter bean! I hope the first night in her crib/nursery goes well!

Joel Snyder on June 5th, 2008 at 3:55 am #

Ella, I am glad to hear that your lab work was O.K. and that Mom and Dad have an eye on your fluid intake. It sounds exciting for you to have your first night in your own room. I hope that you like it and all goes well for you. I hope your appointment with Dr.Abman goes well and I will check on you later. Love,Grandpa!!!!!!!!!!!!!!!!

dr

The WIlliams on June 5th, 2008 at 8:48 am #

What a precious photo of Ella sleeping. Hope your appt. today goes as planned. Stay dry and warm!

Love you guys!

Williamsburg on June 5th, 2008 at 10:06 am #

Wish you didn’t have to take Ella out into the cold and wet today, but since you do, hoping and praying for a wonderful meeting with Dr. Abman. So glad you have Grandma there to help; I bet she is enjoying every minute. Praying consistently for your continued transition back to CO life, including Josh at work. Please let us know if there is anything we can do to help. XOXOXO

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