Howdy. well we had a few moments of goodness today. They gave him clear liquids and for over an hour we thought it was going to be ok. Of course we do everything the hard way...his belly started to hurt and at that exact moment the resident walked in and when she saw his pain she made him NPO again...so that means NOTHING to eat or drink..... now we are back to the miserable Jed. It is horrible...he is just a mess. His memory is a little messed up from the drugs and he seems to keep forgetting he can't have anything either that or he thinks he can fool me. He wakes up and says "hey, can you get me a glass of water?" Of course I almost say oh, yea ok but then I remember and have to tell him no. So he cries for an hour or so,,, "I want mommo's spaghetti, lasagna, chicken casserole and a fresh carrot right out of the ground." This happens over and over again all day and into the night. Some times he asks for a bottle of tea or chocolate milk to break it up a little. But on the good side medically he is doing better. His blood pressure is holding steady and the clotting problem they have now determined is from the PEG-asparanigase (I can't spell that!) it's not in the spell checker either! Anyway this chemo drug is the cause of the clotting problem and when it gets out of his system the clotting will improve, don't ask me how long cause I don't know! The last time he got this drug was 2 weeks ago, he was due to get it again this past Wednesday but needless to say that has been scrapped for good. He still has the central line, they are using it because his TPN (food) is not compatible with his other drugs and this way they don't have to stop one to run the other. As his other drugs decrease they will get ready to remove the line. Before they do that they are going to give him a big bag of plasma to help clot. That should be interesting.
Mom was here most of the day and Dan is here now. Getting a few hours of sleep after being awake so much has made me a nicer person (I think)!
Oh, ok the light story, now some of you may think this is horrible but it was really funny to watch the drama unfold! I hope I can tell it right. Ok, so we are in the PICU, Jed is getting a ton of fentenoyl ( I can't spell that either)and ativan so some of this was drug induced but most of it was Jed being Jed.
He is lying there with his eyes closed and his arm over them saying " I see a light" so I said ok, Ill close the blind. He ignored me and started saying" No, No, light. Go away light. No don't take me light, oh...oh...I'm to young to die, don't let the light get me" I said what does the light want?, Jed said "It wants to take me, oh here I go...oh I see the gates, there's a desk...with a book" I asked him if his name was in it, he said, " No I had to sign in" Then he says " He's taking me on a tour", I asked Jed if he saw anyone he knew, he said " not really but I'm getting the tour and I have a half an hour to decide if I want to stay" I told him it doesn't matter what he decides to do I have mom privileges that over ride everything and he can go anywhere and I will just come get him and bring him home. He said' nope they closed the bridge. I said it doesn't matter I can still come get you where ever you are so check it out and then I'll come get you, He said "oh, never mind". Now I know to some this is horrible but it really was funny and believe me, before I started to play along I checked ALL his monitors to make sure he was OK! This whole story unfolded with Jed waving his arms and being very dramatic, with his eyes closed! Weird kid!
so that's it, I have to get back to my miserable kid. I sure hope by Sunday he gets clear liquids.....if not we'll all be nuts. Love Jed and Kristin
Oh, one more thing he said he could probably stop hating everyone and not think we are all jerks is Dan gives him 300 dollars.....what a turd