Friday Updates

11:30 am. Doctors, nurses, volunteers, aids, and more. Busy morning.

They are going to take Rebekah in for the chest xray to make sure there is nothing blocking her airway that we don't know about. We still believe that the major factor in her oxygenation problem is a swollen airway but there are also other contributing factors. Her red blood cell count is very low and she is in need of a transfusion which will happen today. That might just help her blood carry more oxygen.

We have put a pain killer (Fentanyl again) patch on her back that should give her about the same amount of pain killer she has been getting through the pump. (Did I already talk about this? Maybe, but here goes again anyway). Actually just a little bit less but we have also had the "on demand" button to add as necessary. They are going to try taking the "extra" away and supplementing with liquid morphine down her feeding tube as necessary. This is like we would do at home.

Her tummy tube is showing some concern. After 36 hours of pumping food into her she has not pooped. The first few times we checked her digestive system seemed to be working fine. Now there is some concern that it is not as there is undigested "food" backing up in her stomach. We have had to disconnect the "food" from the tube for right now and see what happens. Right now this is a small concern that could turn into a very major one.

There is some discussion that, if a certain combination of factors play out just right we might be able to go home Sunday. That would be nice in some ways but also not so nice as one of the factors would be that she is too sick for her regularly scheduled chemo on Monday. Another mixed blessing? We are pretty sure that we would rather be well and stay!

Radiation has been cancelled all this week and might start again on Monday but again, that is still up in the air.

You are right in line with us if reading between the lines or your gut impression tells you that, while there are some really positive things happening, overall things are not going well.



10:00am We know many are waiting on pins and needles. And so are we. We just don't know much of anything and are waiting to see how today progresses so we will know:
Are we going home?
Is she getting a tracheotomy?
Does she have an infection?
Will the swelling go down?
Who is available to help if we stay or go?

All that we can say at this point is that the night was difficult with restlessness. Mommy was up most of it and Rebekah is not real comfortable.

I am sorry this is not very much information but imagine how we feel out in the dark too! We will get more up when there is something to tell and we have a moment. PLEASE keep checking.

Some new Links have been added to some of the pages we have found that have posts dedicated to Rebekah and are sending referrals this way. Check them out!