The only real news I have is that the ECHO was fine, his heart looks fine. He did his inhaled antibiotic and the white cells are to be here tomorrow. The point of the white cells is to give the meds a big punch and help them make a dent in this crap he has.The infectious disease resident was here for the "consult". Those of you that read and remember the "yay, you have pneumonia" incident..well she has now rotated to infectious disease. She walked in and said HI guys I am your infectious disease consult...of course you are. Jed stayed sleeping. Smart kid. Anyway, the attending is to come by tomorrow. physical therapy never made it here. Rachel thought she saw a note in the chart but if they came up and wrote a note they never came in the door. Maybe she saw the note from pulmonary or the echo people. Who knows.
He is sleeping now. It has been 2 1/2 hrs since he had Tylenol and his temp is still 40.8 (105) nice. WTF. It went down to 38 .8 (101) for a bit. This fever stuff must be stopped. I am getting ready to start screaming.....WTF... get rid of this crap and fix him. This crud is not going to get him, no way. We are going to transplant in Feb and he is going to be on the road to healthy by the spring. I refuse to accept anything else. SO lets get the show on the road people.
Thanks to everyone that sent gifts and cards. If I haven't mentioned your gift I'm sorry, we might not have even opened it yet. He has not been up for opening gifts. But we do appreciate everything everyone is doing. Thank you.
Trish and Pete..thanks..I am burping the tortilla soup. :) So glad to see you and I don't know what I would do in here without you guys.
Ok, gotta go, tomorrow is a new day...just have to get through tonight with minimal incidents. He cannot stand up at all now, I could not even turn him to get him on the potty. Poor guy. It's much easier with 2 people. Danny was here today and into this eve. Mom and Savannah will be here tomorrow morning and Danny will be back in the afternoon. Think I will just stay awake until they get here.
Love J & K
Oh and his eye site is still horrible, especially when he wakes up during the night. I am leaving many lights on now...might help..maybe
13 comments:
Hey K your starting to sound like me with my fill in the blanks and the reference's to HEY YOU listen up there! You are so right, this bazarre stuff is not going to get the best of him...there are too many plans waiting for him in Feb. to make him strong & healthy. It is now Tuesday 12:49 am..Why am I still up??? I looked out the kitchen window a few min's ago and it was snowing, but it has now stopped. I hope thats the end of it and not the beginning, oh well we will see in the a.m. I hope the physical therapy starts soon, and I'm happy with echo results...when the white cells are given we will most likely see a big change in him and he can then move forward for the better tommorows & be ready for a wonderful spring. K,I love when your words are loud and angry..feels good to talk in random CAPS!! I hope you do get some rest I'm starting to get sleepy too. Hello to Mommo,Dan & SRS.. will be watching for more updates as always..stay well and big hugs for your honey-boy...Later
Its me again..forgot to mention Trent Millers Mom calling and asking about Jed, gave her his web site info. I just read my previous msg too many spelling mistakes in my many comments, I tend to type like a speak, much too quickly and my fingers just get carried away...the fact that its passed midnight also is a big contributing factor. Did I spell that correctl???? Just me being Me....This is Nonna G over and out!
Constantly thinking and praying for you guys. You are sooo constantly in my thoughts and prayers especially when I took Christopher for his Echo today. Don't know the results yet, but hopefully I wont get any phone calls. You guys are such fighters, stay strong and we love you guys!
Laura and Lil Chris
Hey guys. Sounds like NOT such a good day. Kristin you are so awesome for Jed, that's where he gets his amazing strength from. Together if anyone can beat this, it's you two. Thanks for the updates. I am always thinking and praying for you all. Hopefully SOON they will figure out some of this stuff. Stay strong!! Hope you have a better day today. Love You Guys, Kim
[Kristin said]We are going to transplant in Feb and he is going to be on the road to healthy by the spring. I refuse to accept anything else.
This is exactly HOW I have felt for quite some time Kristin. WE WILL NOT ACCEPT ANYTHING ELSE!
Kristin, Jed is so lucky to have such an awesome mom fighting for him when he can't. I hope things are better today.
Keep on fighting! You've come way too far to let this stop you guys. Jed, your are a survivor and we know you can beat this thing. I hope you and your mom can feel the tremendous amount of hugs and love coming your way from us!!!
NEQ!! NEQ!!! NEQ!!!
The Althoff Gang
Oh man - come on white cells!!! Pulling for those neutrophils!!! Go away fevers & fungus!!! Kristin - keep that strength - you are amazing! Studly - you can do this! Pulling for you guys!!! Missing you in clinic!!! HUGS!Holly
K, its 3:30 am Weds morn, as usual my thoughts are of you and your amazing little man. Hoping that those white cell warriors, get their act together and use all of their strength & add that extra power too Jeds super powers and make this problem go away...as alway,love to the both of you and your family. G&J
Fight on jed, Fight on kris,
Strike your gait and win,
Victory we predict for thee,
We're ever true to you, dear old White and Blue.
Onward State, Onward State
Roar Lions roar,
We'll hit that line, roll up the score,
Fight on to victory evermore,
Fight on, on
On, on, on!
Fight on, on,
Penn State!
love you both !!!!!!!
Kris and Jed,
Hang in there-we love you and you will beat this ugly thing! We think about you every minute and have said many many prayers. Kris-Your strength amazes and astounds me and Jed I love you very much!
Hi Guys, just checking in to say hello. Miss you guys as always and you are in my thoughts and prayers always!
XO
Johnny
Thursday 6:25 am, You and Jed are in my head, day & night. I'm short on words this early morning,how unusual..suffice to say, we miss & love you both...
as always your friend, G
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