One month post transplant and Jaxson is still actively (and severely) rejecting. They are trying what I believe is the last drug there is to try, which is called Campath. This drug in simple terms, is going to put his T cells (which help your immune system attack things) “to sleep,” because those are playing a big role in the rejection. I’m really hoping this helps because he’s been through so much, and has been on so many different drugs- he deserves a break. He will have another scope/biopsy Monday & Thursday- Monday may be too soon to see if there’s any improvement with this drug, so hopefully by Thursday we will have some answers and get back on the right track.
He is still intubated and kind of sedated going on 5 days now. To prepare for extubation this afternoon, they’ve gone down on his fentanyl and ativan so he’s not super sleepy. He was awake and pretty agitated (which would’ve been a good time to remove it), but he got pre-medicated (Tylenol & benadryl) before his Campath so he’s been pretty sleepy again the past few hours. The transplant team came by and looked at him, and they didn’t seem to want to extubate immediately, but the PICU team does. So if he wakes up again tonight they will remove the breathing tube, if he remains sleepy/comfortable they will wait until tomorrow.
They removed his Vascath (the catheter in his IJ/neck) because it was only being used for pheresis and they don’t plan to do anymore of that, so there was no more need for that catheter. They started him on lovenox injections today because of the blood clot in his right arm where his PICC is. They’ll let those work for a few days, do an ultrasound to make sure the injections are treating the clot and then pull that line as well. His blood pressures have been looking good, so they went down on his blood pressure meds today. One of the ICU doctors mentioned pulling his arterial line, which is a catheter placed in an artery and is able to give them blood pressures constantly. But his nurse, bless her for advocating for him, told them to reconsider because yes removing lines is a good thing, but is it really a good idea to start removing it before we’re absolutely ready then risk the chance of having to place another one in a couple days? If theres nothing wrong with it, it just makes sense to leave it, especially while it is still being utilized. So we will see what the final decision is on that in the morning.
That’s all the updates I have for now. Please keep praying & sending all your positive thoughts our way!
Since Jaxsons room number seems to be changing more frequently than we anticipated, it might be easier to start sending cards & packages to the Ronald McDonald House:
Ronald McDonald House
C/O Katherine Dahl #1205
451 44th st
Pittsburgh, PA 15201
You can also send ecards on the hospitals website & they will be printed and delivered to his room:
The hospital is Children’s hospital of Pittsburgh and his room number is 514.
And if you’d like to donate or share our fundraiser page:
Thank you everyone for your continued support. 💚