Ashley's Story

She will leave fingerprints all over your heart


What is the "take down" procedure?

I'll explain it the best I know how with the information I've been given. To be honest it remains a little bit of a mystery until you are actually there going through it. It is not something that is explained in detail to you when you go through the transplant. I assume that is because it is so far out and there are so many other issues they must take care of post transplant. Dave and I asked our surgeon to explain it when Ash was last in Omaha and this is all the information we were given. Here goes.

When your child comes out of the operating room from transplant they have what is referred to as a "stoma". This "stoma" is a whole in the wall of the abdomen where a loop of the transplanted bowel is pulled through and is now external. This loop of bowel has a hole in the proximal(the upper end that leads toward the stomach) and the distal(the leading to the lower end towards the large intestine or colon). When Ashley was very, very sick last fall I posted pictures of her swollen body(probably around late Sept. to October? you are welcome to look back to see what her stoma is). The loop of bowel is left out so that scoping and biopsy are easier on the patient. Instead of having to enter the bowel from the rectum they are able to use the proximal and distal holes in the stoma to retrieve these biopsies. Anyway, Ashley doesn't stool in her diaper because of this stoma. The stool(usually) exits through the proximal end of her stoma into her ostomy bag. It is actually called an ileostomy because it is a loop of the ileum portion of the bowel that is pulled through the stoma.

The "take down" is the surgery(major surgery, there is nothing minor about this operation. I'll explain in a moment) where the surgeon actually cuts out this loop of bowel from the transplanted bowel and reattaches the two ends that are left allowing the stoma to be closed(eventually. I believe they leave the hole open and pack it for it to heal from the inside out lowering the risk of infection). Once the take down is performed the patient no longer requires an ostomy bag. It takes a little while(anywhere from days to weeks) for the patient to begin feeds again. The bowel is a touchy organ and it must recover from the "injury" before you slowly introduce feeds again. They start your child on TPN and the whole advance feeds dance begins again. As tolerated the patient's feeds slowly advance 5ccs at at time until full feedings are reached.

The danger of this operation is in operating on the bowel itself. The bowel is full of stool which is full of bacteria. If at any point in the surgery that bacteria gets into the blood stream you have trouble. Sepsis. Systemic infection which is very, very dangerous. In addition to infection the bowel can have strictures or blockages that cause major issues. It is also possible to have a perforation(an whole) in the bowel that once again would cause leaking of the stool and bacteria into the patients system.

In all honesty, I have known patients who have recovered quickly(2 weeks), some who have spent (8wks) recovering and returned home with no problem. I have also known patients who have died from complications of their take down procedure. After the bowel is reconnected it presents a whole new set of issues for the patient. Loose stool, severe diarrhea, rash and skin breakdown that you can't even imagine(worse than any diaper rash you have EVER seen). Potty training our children will be a nightmare. The transplanted bowel is fragile and picky. You quickly learn what foods and what types of foods can be tolerated better than others. The take down is a hurdle in the transplant race. We all know that some people clear hurdles in a race much quicker, easier, and smoother than others. My prayer for Kylie and eventually Ashley Kate(when I get brave enough to have hers done) is that they come through this race without even a scratch from the hurdle.

The earliest a take down procedure will be scheduled is 1year post transplant(Ash rejected her small bowel exactly 5 days before her 1 year anniversary so take down was ruled out for her at that time). They do not do take downs during the winter months when virus and flu run rampant in the hospitals. There is no need to expose them and their fragile immune systems. Usually the surgeries are done between April and October. Other patients choose not to have theirs done for years. Ashley Kate is approaching her 2 year anniversary in late September and we are considering a possible take down for her late next spring before Blake and Allie get out of school.

I will be the first to tell you that the whole issue TERRIFIES me. Ashley has never done anything the easy way. The thought of being hospitalized indefinitely does not appeal to us. We love being home with Ash. She loves not being poked and hurt daily. She is happy and content and beside the whole being 3 and not wanting the ostomy bag left on her issue the stoma doesn't really bother her that much. She occasionally has a really bad skin break down from the acidity in her stool and that can be painful for her.

Now then, I said they usually don't stool from their rectums when they have an ileostomy. Well, recently Ashley somehow has figured out how. The first time I saw it happen was in May when I went to change her diaper in the doctor's office. SURPRISE! I was shocked. Speechless(until I had to ask the nurse for some wipes because I had never had a need to travel with any in her bag until then). She currently stools in her diaper approximately 3-5 times a week and it still shocks me every time. I have no idea how she pulls this off! Anyway, that's my Ashley. She writes her own book and does things her own way.

I know there are parts to the whole take down surgery that we don't know about yet, but this is what we do know so far. Hope this helps explain it a little.

P.S. Cathy,if you read this could you please e-mail me your shipping address. I have a gift for Annabel that I would love to send you. My e-mail is Thanks


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