Well, Cody had a pretty good night sleep but that didn't seem to help this morning. He got up about 8:15 and we headed down to have his radiation treatment. He did very well and we finished pretty quick and came back up to start his feeding tube procedure. The process it's self went without a hitch. When Cody awoke he was none too happy. The feeding tube really irritates his throat. He is demanding to have it taken out. I've tried to side track him but he will have none of that. He just cried himself to sleep so we will see how he is when he wakes up.
I have no news on his blood numbers yet. As soon as I get them I will try to post. I'm a little discouraged though. We can tell a lot about his liver by looking at his stool. When he is having bilirubin issues his stool is very light in color. Well this morning he had a bowel movement and it was very light in color.
It's times like these that I feel so helpless. I hate making him go through all of this. It's just crazy... He has been through so much already.. If we end up taking this tube out it means that he will have to get a button place on his tummy. That will be the access to a feeding tube. I loath the thought of having another hole put in his little body... It's just not right...
Just wanted to let you all know what his blood numbers are. Well as suspected his bilirubin numbers are up to 16.4 as well as all of his other liver numbers are back on the rise. The doctors seem to really be at a lose. They have nothing firm to point at, just the suspicion that it has been drug induced and we have to wait it out.
It's been a very long day. Not only because of what Cody has gone through but Georgetown in general. Many of the nurses we know and love are gone. Some have left for other hospitals. Some are doing the traveling nurse gig and some are in different departments. We still have some of the nurses. The doctors are all still here and we have the art therapists that mean the world Cody as well as Diane and me. One part that really seems to have hit a big time low is the food service. Many of you have heard me mention it before but when you are in-patient you are pretty much at their mercy. It seems that the weekend doesn't really matter much to the people they contract the food service out to. It's like they all leave for the weekend and don't really care much about what happens there on the weekend. Yesterday Diane ordered fish sticks for Cody and they sent up a piece of fish. That's right, a piece of fish. No side dish, no dessert, just fish and milk. This is dinner for a 6 year old that you are trying to get to eat. Today they sent breakfast to Cody but he was NPO - Non Per Os (Latin: Nothing by Mouth) because he had sedation for the feeding tube procedure. For lunch they didn't send him any lunch at all. I had to try and get Cody to eat some microwave lasagna. As of 6:30 this evening they still had not served food. There are two reasons I going off on this subject. First, it's because all of this stuff builds up and this is my stage to say what's on my mind. When families are in this position and they are worried about their critically ill child they shouldn't have to worry about this crap. The second reason I'm bringing such attention to this is because my friend Jeff works at Georgetown and I know he reads my blog. He will make a point of bringing these issues to the attention of the proper people.
Tomorrow Cody will have his last chemo of this cycle and his last radiation of this cycle. The doctor hadn't come to talk to us before I left so I'm not sure what the plan is.
I'm tired and I need a shower. Thanks for listening to me.. I hope I have better news for you all tomorrow.