Jaxon is still doing ok.
They have started two new antibiotics as his white blood cell count continues to raise. He is answering yes or no questions and can follow commands. So, that part is good.
I asked if he wanted to talk to Ellie today and he replied yes very quickly. We will get her on the phone in a little bit so he can hear her voice. The anticoagulant that he is on is $8000 per 50ml according to the nurse.
Every bag they hang is $40,000. He gets a new bag every day. That’s only one medication out of lots and lots. The ventilator was decreased slightly overnight and so far he’s handling it well. They decreased it again about an hour ago and we are watching to see if he tolerates it.
The RVAD was reduced slightly as well. Lots of baby steps forwards but lots of worrying on our part with every change.
Please continue to pray for him. His heart journey is far from over. Each day brings renewed hope but also increased fear for our boy. Prayers are the only thing we need right now. The rest we will figure out one way or another. All we need is our boy to be ok.
Love, Niki & Adam