Update 3/14/12

Long story short.

Pipers lungs are very sick. After being on the heavy duty nasal cannula for less than 24 hours, most of those being a very sleepless and fitful night of fighting to breath, the decision was made to intubate her. While this was a horrible thing to hear when waking up first thing this morning, it paled in comparison to seeing Pipers oxygen drop when she pulled the nasal cannula out and she struggled to breathe while turning purple. Nothing can compare and yet, 30 minutes later when Pipers nasal cannula was removed and the tube placed down her throat my very being sobbed as she struggled to breathe. It took a team of 2 doctors, 2 nurses, a nurse practitioner and 2 respiratory therapist to work together for 20 minutes to bring her back to normal...albeit with total dependence on the ventilator. They put a catheter in to allow them to accurately watch her fluid intake and outtake as her blood pressure fluctuates often. There was also an arterial line placed in her wrist to get better readings for the blood gases and a continual blood pressure. TPN continues, an NG tube was placed to for medications, she is receiving fentanyl and versed to ease the pain and keep her sedated and vec as a paralytic.

Since Piper was placed on the ventilator this morning she has been weaned from 100% oxygen to 55% and her pressures have stabilized as well. Small steps but at least they are going in the right direction. Her BMT doctors seem to feel that there is an infection somewhere on her lungs but she is not yet strong enough to pause the vent and send a syringe down for a sample. Instead they are putting her on a fungal medication and a viral medication in addition to the many other types used proactively already. The hope is to have her more stabilized by tomorrow and they can attempt a culture and have some definitive results for a precise medication to treat it. Her IL2 shot was put off today and they said they will take each day and see if and when she is able to continue.

While leukemia is a very real fear, at this point this situation is more frightening. The doctors were very clear that this is a life threatening issue but feel that if we can get a hold on what we are dealing with, they are optimistic that she will pull through. I pray so.

I still cannot believe that we are here. I already miss her little smiles and the none stop request to have her back scratched. Seeing her lying so still and helpless moves me to tears and yet, I have loved holding her sweet hand and seeing her heart rate lift at the sound of my whispers. That she declined so quickly and so seriously shows us the gravity of the situation and fully stressed the fact that her body is weak and is struggling to survive.

Please pray for Piper, I cannot stress how serious this is.