DAY TWO...MAY THE FORCE BE WITH US

Last night was rough, Tash was SUPER hungry and uncomfortable. He is still nursing but we took a hit to my milk supply when he started feeling sick a few weeks ago and it just got worse between being admitted to the hospital in FL, he was intubated for 2 days, a flight to St. Jude and then he was NPO’ed for 20 hours before his procedure. (NPO = not allowed to eat) Jonathan was a trooper and did everything he could to keep me and Tash comfortable last night. Our nurse was unbelievable as well, I think we finally fell asleep around 4:30am and were back up around shift change at 7am. 

LET ME EAT PEOPLE

Dr. Gruber came by today with the results from his spinal tap. There are 3 possible categories, either they find no leukemic cells in the fluid, they find a few or they find a lot. They found a few so he is level 2. Not great, but could be worse. They also confirmed he is positive for the MLL mutation which Dr. Gruber said she expected as most of her infants have the mutation. So she will treat accordingly...

He had a CT scan today, it was a good bonding moment for him and Daddy. Daddy told him all about face timing with his sisters last night. Tash fixated on Jonathan and flew through the scan. One of the nephrologists stopped by today to let us know they are going to put him on two blood pressure meds, as his blood pressure remains a bit high. The steroids in the treatment will only add to that so they have a watch on him. His calcium remains low and they are still working on that one. His leukemic cells are extremely sensitive to the treatment already which is fantastic. However, they do have to make sure they control the rate at which the cells lyse (disintegrate/dissolve) as to not overwhelm his kidneys with the waste that needs to be output. One of the doctors in Florida described it well, a hypothetical "normal" day his kidneys would process one pound of waste right now they are trying to process 100 pounds of waste. Oy.

ON OUR WAY TO THE CT SCAN WITH OUR AWESOME NURSE ASHLEY

DADDY & TASH SELFIE

Our dear friend Shana stopped by with dinner, and some goodies from her youngest son, Ridge. We loved the cookies and the message - MAY THE FORCE BE WITH US.