By the age of 5 she should be "sporting" an average of 25 feet of small intestine. If you look at the illustration you will see the word native and the word graft. Native belongs to our Ashley. The graft belongs to our donor. The total length of bowel inside of Ashley Kate when combining the two is approximately 6 inches.
If your following the illustration you see the pouch of the stomach at the top then it flows into what is called the duodenum. Stitched behind the native duodenum is the donor duodenum which leads to her stoma. The stoma is an opening that the duodenum exits to the outside of her abdomen. This creates her new ostomy. No longer an ileostomy because she no longer has any portion of the ileum section of her native or donor bowel.
The graft portion that remains inside of Ashley Kate is still in rejection. The surgeon was forced to leave it in order to have enough length to create a stoma. We will only try to manage this rejection with her normal dose of Prograf(her immuno suppression).
Her stoma now exits out the left side of her body instead of the lower right. Its so surreal. It really is. I look at her an try to figure out what went wrong. How did this happen to her. On the right side of her body the old stoma(opening where the bowel exited into her ostomy) is now an open wound requiring packing. It wasn't supposed to be like this.
Ashley's native colon is not connected to anything.
I'm going to show a picture of Ashley's torso. Its not graphic. All wounds are covered with dressings. I just want you to understand what she is going through if even in a small way.
The dressing at the bottom of the photo is the old stoma. It is approximately a two inch oval shaped wound about 1/2 an inch deep. We are doing a wet to dry pack.
The wound going down the center of her abdomen is where they opened her back up. They followed the old transplant incision, cut down through the scar tissue and removed the diseased bowel. It too is left open and we doing it wet to dry dressing as we pack the wound. The bowel was very "stuck". It was not an easy removal. Very intensive, took a longer time than expected. The surgeon described the appearance of the bowel as a "balloon animal". It looked like a long balloon that had been inflated and twisted in several attempts to create "something". One of the first he had seen that reacted this way. There was no hope of saving this organ. He confirmed that once he saw it he knew immediately that we made the right decision to take it out. Removal of an organ is always the LAST resort. It is never a good thing. Our bodies were created to function with ALL of our organs and when you begin taking them out your life will never be the same again. In Ashley's case it was done in an attempt to save her life and give her chance at all.
The dressing at the top covers two of her wounds left from the central line placement(although we no longer have this line we are still trying to heal from 4 wounds caused by the placing of it). She has a deep puncture wound that is tunneled approximately 3 inches into her groin. We are forced to pack it with something called iodoform strips. Using the end of a q-tip we force the strips into the wound in order to pull out any blood, leakage, infection, etc. This is one of the most painful things Ash has ever experienced. She really struggles with this wound. There is also a wound that opened up and became infected just a centimeters below from the same placement attempt.
You can see the new stoma. It is the red piece of bowel that is inside the little white bag. You also see how close the stoma has been placed to her g-tube button. Directly below it. What you can't see in this photo is that on the left side of her body are two more open wounds that did not seal shut around the central line because we destroyed her cellular structure with the thymoglobulin infusions. Those two are being cleaned and dressed daily. This is where the infection of psuedomonas and e-coli was found. Currently it is only in the wounds and on the skin, but not in her blood stream. It is our hope to keep it that way.
Ashley does remain catheterized since the operation. You can see the attachment of that on her left leg in the photo. It will not be removed until the triple lumen(glorified IV) that you see in right groin is removed. It will not be removed until central line placement can be located. The risk of infection is to high being so close to her diaper area.
Ash has a long way to go, but I'm confident that once central line placement is located that we can prepare to take her home. I am comfortable caring for and packing her wounds. I do it here in the hospital and I can do it in our home. If Ashley Kate can get through the next week to week and a half infection free then we will take her home and allow her to just be a little girl again. This is our plan.
She will no longer eat or drink by mouth. Not even the small amounts that she once did. Sips of water here and there will just empty into her ostomy bag. Life is going to be different for her. She will no longer be tube fed into her g-tube. We will keep the g-tube in place in order to give her medications. She will be 100% TPN dependent for as long as we can keep her with us or until another transplant is successfully accomplished.
These are the facts. Like it or not, which by the way we do not, it is our new normal. In all honesty I'll take whatever new normal comes our way as long as it includes some quality of life for the gherkin.
The obstacles before Ash are huge. The biggest of her life, but if any child can survive this its our Ashley. She is the most amazing person I've ever known. Even now the fight in her is admirable. She's not leaving us easily. She's not giving up her life without a fight. Its the way God created her and I'm so very proud of who she is.