Hi everyone. Round one of chemo is finished! Today he slept a lot...nothing new. He also has been having reoccurring high fevers. 103-104 or so. He is on 2 antibiotics....I might have written this last night but anyway, he had a fever at 10am today and then it went away. It came back at 8:15pm. He had some tylenol but as of 9:20 he was still around 103. They will be back in soon to recheck. None of the cultures they have taken have grown anything so I am fairly sure the fevers are from the Ara-C. Now that he has finished his last dose hopefully over the weekend they will fade away. He was much better today.....no ativan! He was taking it for nausea but it was making him weird and weepy so we skipped it today. He had his spinal tap at 11:30 this morning. Carol (the nurse in the OR) always has something neat for Jed. Twice she has given him these sea shells that are called angles wings. She soaks them in bleach water, scrubs them up and sprays them with a shiny coating. Today she gave him a bigger shell that is all shiny and a word find book. He loves her. Whenever he gets to the south OR and Carol is not there he starts asking for her until she comes! Only one time that I can remember he had a procedure without her and he drove the anesthesiologist crazy. Everything that guy did was wrong..and Jed told him "that is not how Carol does it" over and over and over. This guy actually got his ego stepped on .While Jed was out the Dr kept saying was "oh, I wonder if I can do this the way Carol does it" blah blah blah! I just laughed at him. He really was ticked off. It was funny, kind of like a little boy that was angry and stomping his feet! I have never seen that little man again! Anyway, side tracked a little there, Deana did Jed's spinal tap and he went through it with no issues at all. He was awake for a few hours just watching tv earlier in the eve.
He is very thin and very weak. You don't really notice until you see him with no shirt or you see his little chicken legs. Deana noticed today as we were headed to the OR just how thin Jed really is. He has diarrhea now of course (I hate that word, there should be a word that is not so yucky sounding for that) but I guess it is a yucky thing. Ok, so I am sure it is caused by the antibiotics. It just drains him even faster.
Yesterday he didn't eat anything at all. This evening he ate about 2 bites of dried Frosted Flakes and a half of a piece of toast. At 5:30 the nurses ordered Jed a few pieces of bread and some jelly to be brought up so I could make him toast. It is 10;30.....still not here!!! I went down around 6:45 and got it myself but of course no one down there could find any jelly??? WTF oh well. I'll start collecting them on our trays.
They are coming in around 11 to hang his blood. His platelets are low and it will make him feel better.
I guess that's about it, Danny was here today, he and Jed nap together while I shower and do laundry. OH the laundry...I have been doing laundry here forever and most of the time there are no issues but I have found that the last couple of admits it has been different. This time there was a ton of laundry piled up down there when I went in the afternoon so I just brought it back and went back at 7:30 tonight. You are to put your name room number and time on the washer when you are using it and then the dryer. At 4pm there were clothes in the washer and written on the sign up sheet it said DO NOT TOUCH CLOTHES IN WASHER and it did not have a room number or name. I just figured it was a transplant kids laundry so I left it. When I went back at 7:30 the same stuff is in there. I know that can't be a transplant kids stuff...you can't leave it sitting in the washer for hours. I got the volunteer to move it. Anyway the point of this rambling is that I really looked at the machines when I was there. I never noticed before but they are kinda gross inside. The lint filter in the dryer has something sticky coating it. I wish our wing had it's own washer and dryer. I want to do Jed's laundry myself..control thing.. but man I will have to spend a day down there cleaning the machines and the room!!! (for transplant)
They just took Jed's temp again....104. Great. poor guy.
ok, I have whined enough. Savannah said there were about 25 cards in the mailbox today!! someone will bring them up tomorrow.
Trying not to think about missing Thanksgiving...Jed's fave holiday. I haven't seen my Gram B in a long time (my fault for not going there)..and she will be at Adam's for Thanksgiving. :( oh well suck it up!
Gotta go, I wonder if they will give him blood even with this fever? Does that make any difference?
Love J & K