Phoebe

Phoebe is in the ICU. Yesterday evening she started having difficulty breathing and  she seemed to be in a lot of pain. The ICU doctor came to check on her and he ran some extra blood tests. The tests showed that Phoebe has lactic-acidosis - her blood is incredibly and critically acidic. We were moved quickly and the amazing team in the ICU got to work to help Phoebe breath easier.

This morning, her labs have improved. She is breathing easier and not as rapidly and she is now on blow-by oxygen rather than a mask, but there are still so many things going on. 

Phoebe's liver is very sick, she has an infection in her stomach, she is still having fevers, and she is struggling. They are not sure what has caused this most recent complication, but are working hard to figure it out. 

No one wants to be in the ICU with their child, but this close monitoring is what Phoebe needs right now and there is comfort in the careful and very attentive care that Phoebe is receiving. They are doing everything they can. 

Not all of the bone marrow results are in, but what we have from the aspirate shows that the level of leukemia is the same. This is after not receiving treatment for a month. With everything else that is going on, this is good news. Her disease, although it is still there at a low level, appears to be controlled. 

We are overwhelmed, anxious, emotional, desperate, and my heart just aches for Phoebe. We are taking things one hour at a time, and every tiny step forward, every bit of progress, is a victory.

Last night when we arrived in the ICU, Phoebe was wheeled into the room and the nurses got to work - hooking her up to the monitor, an oxygen mask, they inserted an NG tube (because Phoebe pulled her last one), and they put in a catheter. All of this was done while we spoke to the doctor about the many terrifying possibilities including a chance that Phoebe may need to be put on a ventilator. Phoebe didn't make a sound. I felt desperate. I just wanted to hear her fuss and see her fight, but there was nothing. 

This morning, she pulled off her oxygen mask, attempted to pull out the feeding tube, and although her voice is very weak and at times she is difficult to understand, she told the doctor that she wants "the tubie in my pull-up out". She is sleepy and not herself, but that feisty and fierce spirit, it is there. 

Please continue to keep our sweet Phoebe in your thoughts and prayers.