Saturday

We have some big decisions to make and we covet your prayers.

The doctor called last night.  He is proposing that we move forward with a surgery on Monday afternoon.  He suspects that there is an infection or bacteria that has gotten into my shunt but it is hard to say where.  So he wants to pull the entire shunt out, including the parts in my brain.  Then he would put me on an antibiotic regimen and wait for 8 weeks to be sure that I am entirely clear.  I would then be required to have a spinal tap once every week to see what my pressure is doing.

This is very scary and overwhelming for us.  We have a lot of questions that we will need to ask before we move forward with this surgery.  We meet with him Monday morning at 10:00.  The thought of living with the awful headache for 8 weeks is daunting.  Even worse, we have been told by multiple doctors that my ventricles are "slit ventricles" meaning that they are extraordinarily small.  We have been told that it may be impossible to get the tubing back into my ventricles because of the size.  We are afraid to put me into that position.  Even if they were able to get the tubing in, I had to have 4 pretty major surgeries last time because when the tubing was placed my ventricles collapsed and they needed to be replaced.

So a lot to comprehend and deal with.  If we were to agree to do this surgery, the next question would be if I would dare to go back home during this time.  If history repeats itself, my head could become very bad.  We are afraid that if I would go home and my health declines it may be difficult to get me back here.

Many questions and a lot of fear.  My abdomen continues to be quite painful.  I am now taking pretty strong pain  meds to keep things tolerable.  I have my wheelchair so Kyle might take me out for a walk in a little while.  The temperature here is in the 50's today and when we flew in it was 65, so very mild.

We will not have to move now.  The lady that runs this place we are living in recognized that I am not very mobile and rearranged things so that we can stay in this room indefinitely.  We have our name on the waiting list for the place that my mom stayed in when we were here in December.  That place is a little less expensive and a little more private.  There are several people ahead of us on the waiting list.  Some have asked if there is a Ronald McDonald house here but we wouldn't qualify because it requires that you have a child that is ill rather than an adult.  Kyle picked up a loaf of bread and cheese for sandwiches which helps.

Please pray for wisdom and peace.  We trust the doctors and they have been very respectful.  However, we need to be discerning.  This plan was different than what we anticipated and much more difficult to deal with.  Last night was tough and a lot of tears were shed.  Today we are trying to think through things and determine the questions we need to ask.  My situation has been difficult but this is increasing the challenges and difficulties.