Update

Well a lot has been going on and it has been tough to update due to late nights at the hospital and the network at the hotel not working. So on with the updates.

Caleb was put on the Operating Room Schedule for heart surgery for today, however, it was cancelled due to extremely high lipase (enzyme made in the pancreas) levels. The norm should be 200-250 and Caleb's today was 2500. They have done many tests to see what is causing the high levels and visually saw the gall bladder had some sludge (hopefully he will pass that) in it and that one kidney is larger than the other (which may be the way his kidneys are). At this time, they are not overly concerned at the kidney size difference. However, they are wondering if Caleb's cyclosporine (Immunosuppresent Drug) levels are effecting his lipase because they are not at the 'therapeutic' levels. They are wondering if he is stooling out his cyclosporine because he is still having diarrhea due to the immune issues and the cyclosporine was an oral med. They have now switched the med over to intravenous and hopefully will find the right level to make it a therapeutic dose and hopefully this will decrease his lipase enzyme levels.

Caleb's lungs sound clearer and a recent CT scan showed that the fungus/pneumonia is not as bad as it was before. Let's hope it continues to clear and doesn't spread anywhere else. He is coughing which is a great sign.

He also had some issues with arrhythmias with his heart and they are watching that closely also. The cardiologists do not believe this has anything to do with heart failure but they will be monitoring it closely.

There have been many discussions regarding Caleb's neurological status due to his illness as a catscan did show that the brain has suffered some 'injury'-the brain seems smaller. The neurologists say we should know with time how this will effect him. HOWEVER, Caleb did respond to my voice today and turned his head in my direction. He is still not tracking but we are hoping that this will come with time. He EVEN smiled and giggled today when I said something in his ear.

So where do we go from here....WOW what a question. The first step would be, if the lipase level should go down they will probably put Caleb back on the OR schedule for his heart surgery. One day at a time, then we will talk about what is to follow later.

There have been many things that have occurred that I have left out but I am trying to remember as much as I can.

We did have a couple visitors which was very nice. The minister from my dad's church, Larry Kline, came down to visit and brought my dad and we were able to pray in Caleb's room and spend some time with Larry and go to lunch and dinner. What a very nice visit. Thanks Larry and thanks everyone with Vance Church. And today Jo and Rick Terry stopped by on their way home from Hilton Head to peak through the window to see Caleb and to take my mom and I out to dinner. It was great to see them!!! Thank you both for coming to visit.

Emotionally how are we doing? That is the question we get asked all the time. Easy answer - you do what you have to for your child. He is a strong little boy. It amazes me so much what a fighting spirit he has. Every time before we leave his room, I tell him how proud we are of him, how much we love him, to keep fighting, give him a kiss from me and from Brian, and God Bless him. In addition, it is also very hard that Brian is at home and so far away. Caleb and I miss him so much. It would be so nice if Brian could be here with us more than just for a couple days at a time. It is also very hard on Brian. He is doing what he has to for our family. Of course, as you all know West Point Products fired me (that's a whole other discussion) when Caleb first got sick and was in the ICU in Pittsburgh, so Brian is our only income and has been since then. Imagine how tough it would be for your son to be ill and you are so far away and to get updates over the phone and to not be there even though you desperately want to. If there was some way I could get him here so he could stay down here with us I would!!! I love you Brian, thanks for what you are doing for us, we miss you very much.

Again, thanks to everyone for the cards, emails, phone calls, etc. We appreciate the wonderful support system you all have provided for us.

God Bless Caleb!!