Do You Know the Way to San Jose?

Monday morning I faxed the opinion summary from the doctor in Chicago to our doctor here who performed the last surgery. And the waiting began. I waited Monday with no word that the fax was even received. On Tuesday, I called and spoke to the nurse practitioner and she said she did not know if the doctor received the fax or not, she does not get his mail if it is addressed to him. I faxed her a copy to make sure someone would address it and just acknowledge that they would consider the findings of Dr. Ghaly. And the waiting continued. On Wednesday afternoon, Jon called and was able to speak only with the nurse again. She said Dr. Barrow had looked at it and did not agree with the findings and if we wanted to speak to him, we could schedule an appointment next week. He usually follows up with patients about a month after surgery, but we could see him next week if we wanted. The summary from Dr. Ghaly had suggested a cisternagram be done to rule out the possiblity of a leak of brain fluid, as there appeared to be signs of air in other areas of the brain than the ventricles. We know there is air in the ventricles from the last surgery performed. But if there is air elsewhere, then we have another significant problem that will need to be addressed. But we are having great difficulty getting anyone to agree to do the test to rule out this scenario.

As we walk to California, we have reached a point where we have to stop and ask...........Which way do we go?

Jon and I sat last night, just looking at each other. We were at a loss as to what to do next. If it is not safe for Paul to travel and we can't get the help we need in Atlanta, what do we do? The confusion and the sense of helplessness at this point made Jon suggest we say a rosary and then get a good night sleep. We got Michael and went to Paul's room. We barely got started and Paul said he would lead us. Mike was falling asleep since he had been working outside all day in 95 degree weather, but when he heard Paul leading the rosary, he started to pray out loud also. It made me smile! After the rosary, Jon and Mike went to bed. Paul said he was not tired and asked if we could take a walk. It was 9:00 pm. I got my shoes on and when Jon heard us getting ready to go outside, he got up and got dressed also. He didn't want us out at night alone. We walked down the street and I mentioned that Abby dog really needed to get more excercise. I said that since it finally cooled down to the 80's, I should take her to the church parking lot and walk her. When we got back into the house, I called James and asked if he would meet me there when he was done working out. Paul said he wanted to go also, and he would just sit in the car. He was still not tired! James and I walked around the parking lot and let Abby run good and hard. It helped the level of stress I had been feeling and James and I got to have a good chat. For the first time in weeks, I slept like a log, thanks be to God! I found such comfort being so close to the tabernacle in the church and it brought the peace I was seeking.

Today, I got up and read through today's readings in my Magnificat book. I smiled at the very first thing I came across.

WORD OF GOD (Isaih 42:16)
"I will lead the blind on their journey, by paths unknown I will guide them. I will turn darkness into light before them, and make crooked ways straight. These things I do for them, and I will not forsake them. "

I am holding onto this today and am finding the inner peace needed to keep moving forward. We have to decide what course to take next. There was a CT Scan done again today. We will call the office later today and see if they can give us the results. I am mostly concerned about possible overdrainage. If the shunt is now working properly, there is the chance of this happening. The shunt was set at the same setting as the one they replaced, but supposedly, that one was never working. We don't want to travel without knowing the status of how effectively (or over effectively) this shunt is performing. I called Jon today to discuss what we might want to do next - stay and try to keep after the doctor to run the cisternagram or go to Chicago and chance the trip. The test woud surely be done in Chicago, as Dr. Ghaly has made that suggestion to the hospital here. After asking Jon what he thinks we should do, he laughingly said it would sure be great to finally get to 'See the man behind the curtain', referring to the Wizard of Oz. He said that it is hard to make the decision without ever having been able to speak directly with the neurosurgeon here. We have seen a couple different resident doctors (who were not even present for the surgery done on 6/6 ) or have gotten messages second hand from the nurse in the doctor's office.

We are praying for the guidance and I know it will come.

Paul is actually doing very well these last few days. He was up all day yesterday and has been playing the piano a lot more. James had him doing 'squats' (not sure I spelled that correctly) and excercises and Paul is asking to take walks 5-6 times a day. He is eating very well - had 2 sandwiches at lunch yesterday and then had a brownie and ice cream. At dinner, he had 3 very large pieces of pizza and asked if anyone minded if the last piece could be saved for him later on in the evening. He remembered it was saved and before our 9:00 stroll, he went to the refrigerator and got it to eat while we walked! He still struggles with swallowing pills - takes a good 30 seconds to swallow the pill and the liquid. He never wants to drink anything more than a few sips at each meal, or throughout the day. The feeding tube is being used for hydration only at this time.

Paul did something last night for the first time. He prayed out loud and asked God to help him become the person God needed him to be, whatever that meant. He said since God saved his life, he will do anything God wants of him. He asked for help to get better so that he could begin that life. Again, we got the sense that Paul was not even aware that we were there anymore, as he began his 'talk' with God. Jon and I sat listening, and just looking at each other with smiles on our faces. Paul is very aware that he doesn't hear out of his left ear and that he may never have use of his eye again, but only prays that if God wills it, to please bring about that recovery.

Out of the darkness, we will be led. Paul is surely the one who is leading the way with his example of humility and complete submission to God's will. God is working through Paul in lighting our pathway. All the issues at hand pale in comparison to what is the main one - we are really being asked to trust and remain hopeful as we keep trying to live with hearts that love as the Sacred Heart of Jesus loves. There is a point and purpose to all this indecision and it is by these 'paths unknown' that we are being lead. Thank you all so much for walking with us.

Hello Gabriel !!! I know you have been through so much this last year as you too have worked hard to recover from your brain and physical injuries. You are in our prayers, along with Chip and Eric. Brave and awesome young men...................all of you. Your journeys, with your families who have been in the same set of circumstances, have helped guide and inspire us. We pray we will be of some help to those who come after us! Your mothers have set such great examples before me.

Christ be our light,
Shine in our hearts,
Shine through the darkness.

Love,
Jon and Rebecca