For most of the day I have been fighting the urge to cry. There are definitely some days that are harder than others and I am afraid that today has been a tough one emotionally. I really just wanted to crawl up in a corner and cry until I could cry no more. Some words, some situations, some risks just bring you to that place. I am trying to be strong, trying to hold myself together, tying to make the best decisions, but I am really just a big emotional blob pretending to be keeping it all going.

Tomorrow Ashley will go down to have a lung biopsy at 1:30. There are several places of concern. They will attempt to take tissue from 2 of the largest places. Ashley had a CT scan done on the 4th and one on the 6th. She also had another done today. The scary thing is that from the 4th to the 6th there were some definite changes in her lungs. 2 new nodules developed in those couple of days. They are very large and significant. One of them is measuring 1.9cm and is growing. This is not good. When you consider the size of Ashley and the size of her tiny lungs this is actually really bad. They showed me the films, then they showed me 1.9cm on a ruler. It is huge! The most disturbing thing about this spot is that it has grown from nothing to this size in less than 48hours. If it is left untreated and undetermined as to what it is we may have a battle to large to fight on our hands. I feel as though we have no choice other than going into her lung and trying to determine what the battle is. Is it a fungus like mold? They originally thought so but it has not responded to treatment. Is it a bacteria? If so it can rapidly make Ashley very, very sick. Is it a cancer? I pray it is not. If it is, it seems to be growing at an alarming rate. We are once again in a tough spot. The knowing but not knowing is difficult. I hate that my Ashley will be placed in such a dangerous position. To be honest with you, I HATE all that she goes through.

The bottom line is that immunosuppresion STINKS! It is because of this that my Ashley struggles so very hard. She has had almost no transplant related illness' or issues. Everything that we have been battling for the majority of the 18 weeks is because she no longer has an immune system. We are purposely killing her own immune system so that her body will not attempt to reject and kill her new organs. We are trapped in an ugly battle.

Ashley's screaming is improving. We did take a 2 hour nap this afternoon and we are both feeling a little better. She is now playing with a package of pretzels in her crib behind me. I know she thinks she can figure out how to open them and get her hands on one of those tasty little things. If she does then I will happily cheer her on and allow her to munch away. She has not had ANY food in her mouth for 18weeks. She knows what she wants and she is working hard to get into it. Amazingly she is tolerating her feedings better than ever. She is now at a rate of 25cc and hour and she is not vomiting. I am so thankful. She is also breathing very comfortably. I can't even imagine putting her on a ventilator when she is doing this well.

Among the stresses of the "possible" I am scratching, clawing, fighting this hospital to have access to reports and results on tests that have been done on MY daughter. Are they kidding me? I have lost it. This makes the second day in a row I have been placed in this position. Not allowed to have a copy of the tests results because they don't want me to find something without them sitting here in the room with me. This has to stop! I can not sit here and worry and not sleep and make myself sick all night long while they are home happily enjoying dinner with their families. Give me the results! Please pray for me. I am struggling like I have never struggled before to keep my testimony in tact. I am angry. How dare they instruct my nurses that they are not allowed to give me access to her x-rays and labs and reports. Things have to change. I have been here for 18 weeks. I have been nothing but kind, understanding, respectful and the like. Please respect me enough as a parent to not make me wait for when it is convenient for them to give me test results. I feel as though I have been put to the test today and I am not passing this one. Please forgive me. We will come to an understanding about this. I am so upset I am shaking!

All I want to do is make the best possible decisions for my Ashley in some of the worst possible situations. I need them to communicate with me a little better.