What a Day

First please let us thank you all for the kind words, prayers, support, etc. Thank you for buying the bracelets and thank you for your donations. You have all really helped us get through "one more day" and that is all we can ask.

Mommy spent the entire day sitting on a rocking chair with Rebekah flopped out like a rag doll on her lap. Rebekah looked quite uncomfortable with her body flopping one way and her head the other, but I guess with enough pain medicine in you all you feel is mommy. Mommy went through 6 or 7 t shirts with the drool and blood that is contantly coming out of Rebekah's mouth and soaking through the towels that we try and constantly keep on her. When she is awake she is flailing around and it takes 3-4 hands to hold her down.

Rebekah had blood and urine collected to try and grow cultures and try and figure out what is causing her high heart rate and high temperature. We won't have answers back from those for 24-48 hours.

Rebekah started getting liquid nutrition through her G-Tube and that seems to be going pretty well. She is digesting it (don't ask how you test for this!) and is even taking some medicines that way as well. We start with some really high calorie and high fiber "food" to try and get her "Gut" working again. When we get to change diapers that actually have something in them again we know it is working.

Finally we are dealing with some breathing issues. It seems, possibly because of the pain meds, that Rebekah sometimes "forgets" to breath when she is sleeping and her pulseox (a measure of the amount of oxygen in her blood) drops into the 70's. We have seen as low as the 60's. When that happens her heart rate goes up (over 200 now) to try and get more oxygen to the body. Usually a little stimulation on her temple is enough to get things going again.

Having said all of that, Rebekah is doing really good. I know that seems odd after reading all of the above but considering where we were 24-36 hours ago we are really excited. When you are around sick kidos for a while you get a feeling that you have to go by as to how they really are. In medical charting terms we would call it an "initial impression". And Rebekah's initial impression to us is much much better. Basically she is better because she isn't any worse!

Her radiation burns don't seem quite as bad as they are not constantly bleeding. She has some restrictions in her upper airway but she is trying to cough through it. And even though her left eye is pretty much out of service by the radiation, her right eye is starting to get some of that gleem in it that one of you commented on. This evening I had a very small, very short glimpse of my little girl again - something I have not seen for several days.

Mommy and daddy are beat, devastated and worn out - but gaining some hope that we thought was lost.

PLEASE keep sharing Rebekah with everyone you know. I know we repeat this, but we are inspired by your presence on the blog. Keep Rebekah in your thoughts and prayers and ask God what it is that you are supposed to be learning by being here.