Hi all. Stressful day here today. As you know Jed has been spiking fevers for a couple of days now. The fevers continue., He gets a short amount of relief from Tylenol but then his temp goes right back up. He had a CT scan today. He was given anesthesia and intubated. The scan showed some small fungal nodules in his lungs. The fungus is what is causing these high fevers. So here's what is happening: he is to get a different anti-fungal (Abelcet). Don't look it up and read about it. The side effects are crappy. We had this med hung and ready to go but he was having trouble keeping his blood pressure up. That sends me into panic mode. Low blood pressure sends you right to the PICU. They gave him a bunch of fluid and then started to run a bag of blood. His pressure is still very low but holding. As of right now we are safe here. SO his problems have been high fevers, with chills, and low blood pressure. This med he is going to get can cause...high fevers, chills and low blood pressure!!! Ta-Da. Beautiful. If Jed starts to have the shakes and chills he will get Demerol, which calms those effects. Nothing to combat the blood pressure issue though. Right now he is running between 82 over 47 to around 87 over 52.. The 87 over 52 is fine. He runs that low when he is all full of meds and sleeping . Before the fluids his bottom number was 32-37...I don't remember what the top number was. I only usually worry about the bottom. As long as it stays around 50 I will be happy. His temps today were any where from 37.8 (100.04) to 41.8 (107.2). He is sleeping on a cooling blanket ..not too happy about it but tolerating it. His blood will be finished in about an hour. Just now when we sat him up to take his tylenol I had the nurse look at his eyes. They are so red around the inside edges, almost bleeding. Low platelets will do that. Needless to say he is going to get platelets too. I am not sure if they are going to run the anti-fungal or the platelets first.
What we want to happen is that after 2 or so doses of this anti-fungal crap he will start to feel better. of course he will still feel rotten when he is getting the med but better in between.
My hopes for Christmas keep getting smaller. Now instead of hoping to get out of here for the day I am hoping he feels well enough to just be awake here and open some gifts. We got all the ornaments for the nurses and staff up here finished and the snow globes for the fam but we have not gotten the ornaments for clinic finished yet. I would do it for him but I know people want ones where he has written his own name! So clinic friends you will prob get yours later!
Just a little weird info...his nurse all day was named Renee...his nurse tonight is Kristin.!! Neat!
Carol, the nurse from OR South that takes care of Jed for spinal taps and bone marrow aspirations, stopped in here today to give us..I mean Jed, a bag of cookies she made. Chocolate chip and these little Italian cookies with icing....OMG I am going to eat cookies til I puke tonight. I feel myself expanding with every passing moment! Yesterday I got a tin of little cookies with Reese's peanut butter cups in them........they are all gone and I didn't share. Thanks Cathy! Thanks Carol!
Platelets are here, so onward we go. I will let you all know what happening as we move forward through this ...little hard part. THanks for all the comments and notes of encouragement. When he is awake I read them too him..when he lets me!
Love Jed and Kristin