A Little Bit Calmer

Thank you Steve for being able to get a quick update up for us. There are so many of you that are checking regularly that I want to keep updates as soon as possible.

Rebekah is doing better right now. Basically that means she is out of surgery and is so heavily medicated that she is pretty much just laying there. Right now we are trying to walk a fine line between keeping her as pain free as possible but not depressing her respiratory system. Finding out where this line is is difficult because of the anesthetic from this mornings surgery.

She went in for surgery to put in a G-Tube. The surgery requires that she have enough anesthetic to control the muscle reactions in the stomach area which is also enough to affect her breathing. Although Rebekah stopped breathing and could not continue on her own the anesthesiologist was able to keep breathing for her at a safe level.

Her airway (mouth and throat) are so full of sores and ulcers that even touching her face with the breathing mask was causing bleeding. A tube in her throat would cause even more and once inserted would not be able to be removed until the bleeding and ulcers were gone thereby committing her to a ventilator and the ICU for an unknown period of time.

We are right now trying to deal with what we should do if she again gets to the point of needing intubated. These are the most difficult choices you could ever make for someone and definately not choices that a parent ever wants to be facing for their child.

Although we have known all the way from her first diagnosis that this could kill her eventually, today as the first time that I have ever had to look into her eyes and believe that it could be today. It took me sevearal hours to come to that conclusion but that is what we are/were (I am not sure what is the right word) seeing.

Right now visitors are kind of difficult so please keep up the support in other ways.