Some time has passed and I've done a lot reading. A lot of crying. A lot of searching. I'm doing the best I can to grasp hold of the new path we are going down. It seems as though its always something. Something I never saw coming and had yet to learn about.
Basically the pathologist called this afternoon to share with us that something else was found on the slides from Ash's biopsy today. Something that didn't show up on the stain until today. Something that pretty much changes everything as far as our hope in getting closer to home anytime soon.
We went from being told in rounds this morning that not this week but possibly we could discuss it this time next week to weeks and weeks and months. That in itself is devastating to me. I don't know if I've told you lately how much I miss our kids. How great they are and how very much I love them. The hardest thing for me to swallow is the length of separations we are forced to endure as Ash battles illness after illness. If only Omaha were close to Texas, then I think my coping skills would be a whole lot better.
Anyway, they found spores. Viral spores of CMV in Ashley Kate's bowel. What does this mean? Lots. It means that the pieces are starting to fit together and that the severe abdominal cramping, the high unexplained fevers, the aches, the high stool output, all of it are beginning to make sense. She began treatment for it today. An IV infusion twice a day for an indefinite length of time. In 3 weeks we will know if her body has responded favorably. If it hasn't then it gets uglier and we try a new drug. A drug that she can only receive here. If that still doesn't work then we try the 3rd drug. Again it can only be given to her here. The treatment may need to last for months. Yes, I was told months. Best case scenario, drug number one works with her body and we may be able to transfer in about a month. Barring any secondary complications. Now it gets tricky. At this time the virus is not in her blood stream. It has a chance of going there. If it does(her bowel walls are very injured and very weak and it could pass from the bowel throughout her system) then we have the potential for lots of trouble. They actually used the word ventilator when informing me of it today.
The biggest blow came when they told me, "We have no idea if she was ever in rejection or if she has been battling this CMV. We will never know. All we do know is that her bowel is sick. She may have had the rejection and contracted the CMV, but we will never know for sure."
The potential for danger is there. It is real. It hasn't happened yet, but it could at anytime.
The next blow came when they told me she cannot be immunosuppressed while fighting this virus. What? That's what we have been doing daily for her for the past two years. Compromising her immunity on purpose to keep her organ grafts safe. Now what? We stop all immumosuppression? For the first time in 2 years she has not had her meds tonight. On top of being told this, remember the statement from this morning? "We have her immunosuppression all messed up." It is really, really high today. What does this do to the new found virus?
This is all so confusing. CMV for you and me is no big deal. CMV for Ashley can be devastating. There is no way to tell what will happen, but they did share with me some of the awful possibilities and it rocked me to my core. All I could think was, "not again. not again. not again."
Do we, does she have the strength to do all of this again?
In addition to the emotions that are enveloping about Ashley Kate's health are the very real emotions of being away from home, from those we love, from the holidays, from all our surprises had in store for the children, from privacy, from Dave, from Ash's "normal life". My heart is broken again. It is bruised. Like a bruise that never quite heals. It is always sore. It is always there being bumped again and again and again. It hurts.
The last thing I expected to hear today was more bad news. I was getting hopeful. We were recovering. We had mucosa and villi present. We were going to heal and get home. Now I am informed, "Too bad that you don't want to live here for the next couple of months." How easy it is to say that when you have never lived like this. Months of separation from your children while one struggles to survive. Months away from you spouse, your best friend. Months away from all that makes you feel safe and secure. Your right. Too bad for me. Be thankful its not you. If it were you would understand the tears that I am fighting back so that you don't see them fall from my eyes. You leave this hospital each night and go home to your family. I sit here each night and try to comfort my child who cries herself to sleep each and every night wondering when I'm bringing Ashley home. Your exactly right. Too bad. I sit here and rock a baby girl who doesn't understand why her tummy hurts so much and just wants her daddy. Too bad. I listen to my son over the phone and I hurt because he feels as though he has to be strong for me. At 13 he has to show me strength so that I don't fall apart on the line. Too bad. I listen to my husband's tired voice as he has nothing left to offer at the end of a day. Just a broken heart.
It really is too bad. Tonight we hurt. Plain and simple. Some days it doesn't even seem real. Are we really doing this again? Tomorrow we may have a grasp on this twist in our situation, but tonight we cry and we hurt. Our baby wants to go home. She waves "bye, bye" and points to the door each day trying to convince me to get her out of here. It really is too bad. She just doesn't understand and tonight neither do her mommy and daddy.