It’s been 22 days since Allie’s transplant. The last update I posted had what turned out to be a very ambitious plan that didn’t quite happen on the time table that was told to us. That said, she continues to progress, it’s just taking a little longer with a few bumps in the road. Her 1st (and only so far) biopsy showed either mild rejection vs infection (though so far negative cultures) vs reperfusion injury. She’s getting a 3 day course of high-dose IV solumedrol to help stimulate her lungs into working a little better. Her CellCept (one of the antirejection meds) has been on hold because they discovered she had pneumatosis intestinalis which is abnormal collections of air within the actual wall of the intestine. General surgery was consulted and they were keeping a close eye on her as this condition can be anything from benign to a true surgical emergency (necrotic bowel). They discovered this condition on a CT scan which was done because of a flair in localized abdominal pain she was having last week. They stopped all oral intake for a couple days because of this. CellCept can is sometimes be associated with pneumatosis, but then this condition can be a complication of transplant itself or even from obstructive lung disease (who knows, she may have had when she was having so much belly pain and distention since being vented in Rochester). Regardless, the good news is the situation has improved, the pneumatosis appears to be benign at this point, and she’s back on regular food. One of the transplant meds (tacrolimus, antifungal, antibiotics) has caused her white blood cell count to drop significantly and she received a Neupogen injection today to stimulate her bone marrow to make more white cells. Neupogen causes bone achiness but usually does a good job to rebound the white count. And….drum roll….another chest tube was removed today! She’s down to 1 remaining. She’s much more mobile with only one chest tube so we got a full tank of O2 and loaded her into a wheelchair and I took her for a ride around the hospital so she could see where Scott and I go when we disappear to the cafeteria or Starbucks. It was good for her to get out of her room. They downsized her trach yesterday and today was her first capped trach trial so that she was breathing through her nose entirely for several hours and kept her oxygen saturation up nicely. They had her on 5-6 liters oxygen via nasal cannula when she was capped and her O2 sats were holding at 95-98%. She’ll return to a trach collar with the speaking valve overnight to rest her, then her trach will be capped again tomorrow. Once we’re sure she tolerates being capped for extended periods of time and overnight, the next step is for the trach to come out. Scott and I attended a “discharge class” this morning readying us for the day she gets out of here and goes to the Family House for the next stage of recovery. Scott and I will share caregiver responsibilities as she will need someone with her 24/7 and Scott has been lucky enough to have his company allow him to work locally while he’s down here in Pennsylvania.
As always, there are not enough words to thank everyone for all the donations honoring Allie and the tremendous support Allie and our families continue to receive. From the bottom of our hearts, we so deeply appreciate the goodness in people and the love sent our way.