And now we wait

I don't know anything from the tests and scans Nick had this week.

We arrived in Birmingham Monday evening. Nick drank his prep for the pill camera. We actually had a pretty good night. I guess that's one small benefit to Nick not having a large intestine. These preps don't take all night.

Tuesday morning we got to the hospital bright and early. Nick did really well handling the diet restrictions for the 24+ hours. He was only allowed clear liquids after he ate lunch on Monday. Then he couldn't have anything to eat or drink from 10 pm Monday night until almost 10 am Tuesday morning. Then it was only clear liquids again. He was able to have some pudding a little before noon on Tuesday.

The test ended a lot quicker than we anticipated. The pill camera takes as long as it takes. It ended it's journey a little after noon on Tuesday. We weren't anticipating it to be finished until after 3:00. Another blessing there. The GI nurse was a little concerned that the camera might have traveled too quickly to get good pictures. I haven't heard either way yet.

After we left the hospital Tuesday afternoon, I took Nick to eat some food. He was so hungry. We had an enjoyable evening swimming at the hotel pool. We were the only ones in there. I got a nap in and was able to catch up a little bit on resting.

We were back at the hospital on Wednesday morning. This time Nick was only without food and drink for a few hours in preparation for the CT scans that morning. Nick was worried about being able to drink the bottle of nasty contrast for these particular scans. It's not the usual for him, and this stuff even smells bad. The change in the contrast this time is so the doctors can look at the intestinal lining to see if there are any polyps growing from the genetic disorder.

Nick drank the contrast down without any problems. I am so proud of him! He managed to keep from getting sick from it. That is a huge answer to prayer. Once the CT scans were finished, we headed back to the cancer clinic for Nick's check up and infusions.

The checkup went fine. The doctor didn't find anything that overly concerned him. Nick's Igg level is AWESOME!! It's very much in the normal range right now. BIG PRAISE!! Most of the other blood counts were good as well. There were two that stood out as being off though. One is the sedimentation rate (aka sed rate). It basically measures how fast the red blood cells settle to the bottom (I think). The faster they settle, the higher the sed rate. That higher level is an indicator of inflammation. It is a blood test used in many ways to diagnose or interpret different diseases.

Anyway...Nick's sed rate was a little high. Not majorly outside the bounds of normal, but it will bear watching. The other lab value that is a cause for concern is the GGT. This number is an indicator of how well the liver is functioning. We have lived by the GGT for 16 years. The liver transplant team looks at this number to help determine if the liver transplant may be going into rejection or is already in rejection. Nick's GGT has been very good for a very long time. It was outside the bounds of normal on Wednesday. Over 50. 50 was the magic number the first several years after the liver transplant. As long as the GGT stayed under 50, we were good. Nick's level on Wednesday was over 50. :-(

I'm not sure whether to worry about it or not. The oncologist said that we would also watch this number as well to see if there are any problems. I know the transplant team will be looking into as well. I don't really know what to think about it. I don't know how the transplant team handles the increased levels after so many years. So...more uncharted territory.

While Nick was receiving his chemo and IVIG infusions Wednesday afternoon, there was an emergency with another child in the same treatment area. It was really bad and really scary. The child had a severe allergic reaction to the treatment he was receiving. The staff ended up having to call the CODE team to come help get the child breathing again. They were able to get him stabilized and he was moved to the intensive care unit for further care.

That situation is a part of the reason why I don't have any results on the PET or CT scans.

The oncologist said he will call me once he has thoroughly reviewed these scans and compared them to previous scans. I had hoped to hear something by now, but I haven't. Nick's doctor is notorious for calling at really odd times, so it's possible for me to hear something this weekend...even on Sunday.

I'm doing okay with leaving things in God's hands most of the time. It helps that the kids are starting school on Monday. Nick's first day of his senior year. Kacie will have her first day of  seventh grade..."junior" high. WOW! When did they grow up?

 As always, we are trying to remain...

In His Grip!

Kristy