Ashley's Story

She will leave fingerprints all over your heart


Morning News

After speaking with the transplant surgeon on rounds this morning we have an idea of what we are facing. He shared with us that he received a call yesterday afternoon from the pathologist that reviewed the slides of Ashley's biopsy and his words were "in current severe rejection with very little remaining mucosa(this is the inside lining of her transplanted bowel) and what little mucosa that remained was severely damaged." This is what we know.

Currently Ashley has received the first of the three very high, very powerful doses of steroid treatment. She had an immediate reaction to it yesterday and the right side of her face became grossly swollen. She was angry, agitated, and miserable. These are all very common side effects of the treatment. She will not be her happy, silly self while undergoing treatment. Today she will receive the second dose and the third will follow tomorrow. At the end of the week they will do another biopsy to see if there has been any regeneration of the villi and the mucosa of the damaged bowel. If not, then we begin round 2 of treatment. If you remember her episode last fall then you will remember the first round did not do the trick and we were required to start round 2.

Ashley is stable at this time. Her vitals are all strong and other than the gross swelling and her understandable attitude she looks good. We know how quickly these things can change. The first time her bowel rejected she encountered some sever complications and her life was in jeopardy for several days. Our hope is that this will not be repeated this year. Wouldn't it be wonderful if she remained stable throughout the treatment! I am still hopeful.

It will take "weeks and weeks and weeks of healing" to borrow the words of her surgeon this morning. If I think to much on this I will fall apart once again and so far this morning my eyes have remained dry.

There is some concern about her sodium and potassium levels. They are really messed up and last night her heart rate remained very low the entire time she slept. They pulled in an EKG machine at 3:30 this morning because of the erratic behavior on the monitor. Her heart rate ran in the 50-60 range. This morning it is a comfortable 75-78 while she sleeps. At some point she is going to have be "leveled" out, but the way to do this is undergoing much discussion. We are hesitant to start the whole "adrenal insufficiency" theory and get caught on that slippery slope without solid proof and testing. Its an ugly ride.

Ash is comfortable this morning and has yet to wake up. Her output has drastically slowed as well as her urine output. This is concerning. Too much is an alert and too little is just as frightening. The one thing we do know is that her transplanted bowel is very, very sick.

This is what we know so far. We have an idea as to what led her into this rejection, but I will save that for another time. If you stuck with me this far then I want to say we love you and appreciate your time, your thoughts, your encouragements, and your prayers. Its an impossible journey to take on your own and we appreciate you all. God bless. Trish


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