Stepping Lightly but Smiling BRIGHTLY!

After 12 weeks, 3 long months of illness, our sweet Ashley Kate has finally managed to bring her output under the "magic" goal. Now I realize that I must step lightly because things change so quickly with Ash, but I can't help but smile. She looks AMAZING! She is happy and playful, silly and ornery, beautiful and delicious!(I so badly want to show you how good she looks, but my camera is broken and the weather won't allow me to run to Target to get another one yet.) I am beginning to feel encouraged and it makes my heart happy. If Ash can continue on this trend then we might actually make it home.

Blake and Allie are so happy about her poop success this weekend. They know that all decisions for the future of our family center around the amount of poop that comes from Ashley Kate's stoma. I know it sounds funny and perhaps a little disgusting, but that is the reality of our life and each and every phone conversation we have begins with the question, "How much did she poop today." If you have never seen the photos of Ashley Kate's first few weeks back in Omaha then you may be confused about our constant postings and talk of stool output, stomas, and replacement fluids(the "sock" video shows what her stoma looks like). I am going to try and explain what we mean.

After her transplant Ashley Kate came out with a stoma and an ileostomy. There is an actual loop of her small intestine that comes out of the opening(the stoma) that was created on the right side of her abdomen. This is where her GI doctor enters her bowel in order to take biopsys. There are two openings in the loop. You can actually place your fingers inside of them if need be. She stools or poops out of the proximal(the top) opening. The distal opening(or the bottom opening) is the section of bowel that leads to her colon. At this time her colon is not functional because of the openings that allow all of the stool to come out of the proximal end. The colon is the large intestine and it is responsible for absorbing the water or fluid from her stool. Since it does not function yet(it will once her take down operation is performed which will be sometime in the far future because of her episode of rejection), her stool output is liquid and is emptied from the ostomy bag into a cup. Her diapers only contain urine. We measure and calculate the amount of stool that is caught and collected in the ostomy bag that encases the stoma daily. The number we end up with tells us a lot about the grafted organ. A high stool output indicates that something is not right. It could be a lack of absorption, a viral infection, or rejection. It is this figure, the amount of poop that she puts out, that decides when we return home. I never imagined our lives would one day be determined by the amount of poop our youngest child would make. This is why we find ourselves stepping lightly.


I share all of that so you might understand why we talk so much about ostomy output in this journal. Basically it all revolves around poop, and although I know it may not be proper conversation for most families it seems to always be our topic of the day. The kids are so used to it they don't even giggle anymore. They ask the question, "How much did she stool today?" without even breaking a smile. They are so used to ostomy care they could be trusted to change the appliance on their own by this point.

Today we are smiling brightly about the lower output, but still stepping lightly so we don't naively "slip" into believing all is well. Nevertheless we are encouraged and we are thankful. I realize this post was literally "full of it", but still I thought it important to let you know how prayers are being answered in this area for our sweet Ashley Kate. Have a great evening. Trish