Every day we see Rafi getting a little better even when she sometimes takes a step back. I was a little premature in saying we broke the patterns, or perhaps the fake wood was responsible. She slept horribly last night, which meant I really didn’t sleep at all. We decreased her fentanyl again and that made her a little uncomfortable. At one point she was receiving 1.2 mcg/kilo/hour and now she is down to .3 mcg/kilo/hour. She was also nauseous throughout the night and she told me at around 2am, “my stomach hurts” and “I am scared”. I ask her what she is scared of and she says, “I am scared of throwing up”. There really isn’t much to say to her at that point besides, “Mommy and I understand you are scared, and it’s OK to be scared. We all throw up sometimes but it makes you feel better.” So I pat her back and try to get her to breathe slowly. I ask her to breathe “in through the nose and breathe out through your mouth slowly”. What kills me, and just makes me so darn proud, is that she listens and she does it and she eventually drifts off back to sleep. For ten minutes. Finally she asks me to “push the button for the nurse, I want medicine”. She speaks in full sentences. It cracks me up.

Problem is this went on all night last night. Thank goodness Jackie shows up early to the hospital. I slept for an hour and a half and then got another nap in a little later. This journey is tiring, even though we are only along for the ride. Jackie and I are both amazed at those that do this alone. It is impressive.

Rafi’s numbers did drop again but only a little bit. Actually they dropped less than expected. We are seeing the benefits of the white blood cells and are amazed at what those cells are capable of accomplishing. She is really looking significantly better. Plus, she started to shed to excess water weight. She was down almost half a kilo yesterday and is now less than a kilo above her admission weight. You can really see the difference in her body. The bandages fit differently, she can make a fist with her hands. Her eyes are open wide and they are bright with life. It’s great to see. We hope this continues especially since we decreased her dosage of the diuretic she is on. The process of weaning her off the IV medications and transitioning her to oral medications has started in earnest. We want to get her out of the hospital on Monday after her second set of skin biopsies. In that endeavor, we are stopping the ativan altogether, and giving her one anti-nausea and one antibiotic through the gtube now. In speaking with the doctors, we all agreed to keep her on the fentanyl a little longer as we transition her medications as those may increase her discomfort a little. We’ll see. Rafi has a way of constantly surprising us.

We again left the indoors and ventured outside to the swings late in the afternoon. Sam and Marybeth Sheridan (Sam is patient #7) joined us at the swings. It was nice to spend the time with them. Sam really is an incredible young woman. She has fought this disease for years and this transplant with strength, dignity and grace that I hope Rafi will emulate.

As we come closer to the end of this leg of the journey, I realize how relieved I am. We are far from being out of the woods, and that fact was driven home yesterday when Zach passed away. He, by the way, did not suffer from EB. He was however, significantly further along the transplant road and our other neighbor is more than 240 days past her transplant day. It makes me realize that there are still battles to be fought, sleepless nights ahead of us, potential readmissions to the hospital as well. We still have blood pressure issues and the risk of graft versus host disease and infections from bacteria and viruses to guard against. There are probably a host of things I have even thought of yet. But still, I am relieved. Rafi has fought through weeks of 104+ fevers, blood blisters that wouldn’t drain, wounds over 90% of her body and still she smiles, she laughs, she plays. She has even started to eat. She loves her popsicles, baked beans and chicken soup. She is a warrior, and that gives me some comfort.

Until tomorrow…….