A quick update…
Reese has been diagnosed with Protein-Losing Enteropathy. This refers to any condition of the GI track that results in a net loss of protein from the body. We know that Reese has damage to her gut wall that is still healing, and we assume this is the cause of her protein loss (i.e. albumin among others.)
Two weeks ago, Reese was still receiving 2x a day albumin (this is very strange, even in this bizarre BMT world we are living in.) This dose was moved to 1x a day (the same amount, consolidated.) Then, a week ago, this dose was cut in half, with the hope that Reese’s level would remain above 2.0. It did this, with tested levels showing 2.3, 2.1, and 2.2. But, more importantly, we watched Reese’s weight, ins and outs, measurements, and overall well being for any signs of distress. This wean was a “success”, Reese’s body handled it well. Our team has a plan. Tomorrow Reese’s albumin supplementation will be withheld, levels checked, and we will watch carefully to make sure she is safe. The plan is to attempt a move to albumin supplementation every other day. My team is consulting GI as well as nutrition, to see if there is anything else we can do. We are still holding our breath and praying for Reese’s gut to take charge. She has come SO FAR, but excessive protein loss is not a small thing.
Reese, talking to Chris about Santa, stockings, and coal.
“If I got coal, I’d put it in the ground until I had a diamond.
Then I’d make a circle and put it on it to make a ring.
Then I’d marry Quinn.”