Morning Rounds

Morning rounds didn't really shed much light on Ash's condition. At this point we don't know what is making her so ill. If she is not in rejection(we will biopsy around 1:00) then it is more than likely a virus. The problem with having a virus is that most of them are not able to be diagnosed and treated. That means that we have to ride it out, and doing that with a weakened immune system and very fragile transplanted bowel can cause her to be sick for a long time. My question this morning was this,"Do we ride it our in Omaha or can we do this back home?" The answer? "Lets just wait and see. She has to be supported during the course of whatever she is battling and right now she is in the safest place she can be." Although I do not wish to stay here away from our family I agree that they know her best and can best take care of her.

Ash is sick. There is no getting around that fact. The walls of her vessels are very weak causing all of the fluid we are pumping into her to seep into the tissues(they call that 3rd spacing). Because of this her kidneys have shut down. They did place a foley cath in her this morning to better monitor her kidney function. She is very swollen because of the 3rd spacing and is starting to lose the look of our Ashley. They reminded us that it will get worse before it gets better. She continues to run fever and is very shaky and trembly. She will be requiring a blood transfusion this afternoon because she has become so diluted while trying to re-hydrate her. Her little tummy continues to cramp and she is groaning and grunting with much force.
She has required several albumin infusions, as well as calcium and potassium. Her electrolytes and blood chemistry is very messed up because of the loss of so much fluid through the vomiting and stooling. She has not been awake much. She is just weak and feels really bad. Ash has not eaten or received any nutrition since Saturday so they will be starting TPN tonight.

Overall my heart is very sad and very concerned. If her biopsy returns to us normal with no signs of rejection then we will lower her immunosuppression to try and give her body a chance to battle back against whatever has invaded. The catch to doing this is that she walks a very fine line of possibly slipping into rejection without the protection of that immunosuppression. Transplant is tricky and not easy. My sweet baby continues to be fragile and can at any moment pick up something that can cause you or I no more trouble than a trip to the restroom, but to her it can be dangerous. Her life is precious. It is a gift that must be guarded at all times, while still allowing her to grow up, live, laugh, and love life. Figuring out how to make this happen is really tough.

It all comes down to this: trust. Trusting the One who gave her life not once, but twice to protect it and to do what He knows is best for her. I'm just her mom, and the only thing under my control is showing her how much I love her and teaching her how much the Father loves her.

Again I thank you with everything in me for loving her enough to pray for her. It is such a treasure knowing that people are continually lifting her up. May God bless you for caring. Trish