Laying Low

Our plan for the week? Heal. Lay low. No surprises. Just heal. I'm hoping things go according to plan. No major changes. Just day in and day out work on healing inside of her.

Currently there are no biopsies scheduled. I've got my fingers crossed that it stay this way. I truly believe she needs a break. With each scope we seem to go backwards for a few days as she battles fevers, ilius, and discomfort. If she could have this one week off with no "intrusions" then I believe it would do her some good. This morning the surgeon on rounds( the one I just met and think he is "all that" when it comes to transplant teams) agreed that if she can stay "status quo" and not pull anything on us then we will let her be this week and evaluate early next week her progress in healing.

She spent a great majority of today sleeping. Her new blood pressure medicine is to blame for that. Last Friday I was faced with a choice. Because of all the meds she has been on while battling this rejection episode her blood pressure became quite high. For like 2 weeks, and so I knew it was coming. The drug they wanted to place her on was one that Dave and I made up our minds to never try with her again. It was the drug that she was on for the 4 months of vomiting. The vomiting that never ceased. It was every single day for months until she finally aspirated and ended up on the air flight in the middle of the night on our way to Omaha while on the ventilator. It was one of the scariest days of our lives. She was so incredibly fragile and we had no idea if she would or would not pull through. The very day we convinced them to allow us to stop that medication the vomiting ceased and has never returned. It was after pleading our case last Friday and refusing to agree to trying it again that I was given a choice. Choice A would lower her heart rate. Ashley's heart rate while resting is already fairly low and so placing her on choice A would risk her heart rate dropping to a level that she may no longer profuse enough blood to her organs while sleeping. Not a good choice. Choice B caused kidney damage. Ashley's kidneys are already struggling. From the 2 years of Prograf and the level that she needs to be managed at to stay out of rejection. More damage to her kidneys wasn't that appealing either. Choice C was one that may result in sedation. Not something I am a fan of especially while my baby is already struggling to maintain who she is at this time. I was told that parents of ADD/ADHD LOVE this drug and want their children on it. I don't happen to be one of those. I don't want Ashely subdued. I don't want her drugged and sluggish. I don't want her to settle down. I want to have to chase this child around my house and pull her off the chandelier. I desire that more than anything. I wasn't sure what to do. I knew that I could no go back and risk her life with the constant vomiting. I also knew that in an attempt to protect those hurting kidneys we have landed right back here in Omaha battling rejection. How could I intentionally cause more damage to them? Choice C was the safest choice. Even though it is hurting my heart to see her slip away from us(there are times she is spacey and distant, not making eye contact or interacting at all) I thought it was the least life threatening choice. I wish she didn't have to be on any medication for her blood pressure. I was hoping it would not react to the high drug levels and that it could all be avoided. Unfortunately, it wasn't.

Ashley Kate arrived back in Omaha on only 1 medication. Her immunosuppresant, Prograf(FK). She is currently on 5 and another one is probably headed our way any day. Each and every one of them cause side effects. There is not one single drug that can be taken to help in one area that does not do damage in others. It is just the way the game is played. You attempt to help one thing and end up hurting others. Its enough to make me crazy!

Anyway, we moved. To room 6216. This is actually really good news for Ash and I. We have a much bigger room that is much nicer than the other one we were in. What a blessing it has been. We have lots of lights that work(they were broken in our other room and we spent most of our time in the dark). We also have a huge window that we can sit and stare at the sky through while sitting on our rug. We have a bulletin board in here, and this morning my sister went and picked up things for us to "fix it up" with before they left. It now is fashionably pink in Ashley style and counts down the days until her appointment at the castle. I have no idea if we will make it there or not, but in case you were wondering there are 50 days until "the" holiday. You know the one I love so much(I'm not gonna type about it cause it makes me cry). We also sat up last night and all cut out paw prints to place around the room. It is so great. It was my sister's idea and I love it. She has "clues" on the window, the tv, her bed, the back of the chair, the bulletin board, the wall, and the med box. My niece Bayly and I cut out letters for her door and decorated it with butterflies. The room is such a blessing. We have a "wall" of memories that houses 21 photographs of our family right across from Ash's crib so she can see her daddy, her brother and her sister all day long. We are happy and" content" as we sit and spend our days here in the hospital. Our room is very pink and very Ashley. That really makes me smile. We have shelves and storage and a couch and our rug and a recliner and her crib and our "office", and lots of Hawaiian Breeze air fresheners plugged in. As far as hospital living goes it couldn't get any better.

Today were just being grateful. Grateful for our new room and for the nurses who made it possible for us to have it. Grateful for our visitors this weekend. Grateful for no "plans" other than healing on our agenda for the week. I'll try and get some pictures of our new room together and show you how we live while kicking back in Omaha, Nebraska. It's definitely not our little yellow house, but we are trying to make it as much a "home" for the two of us as possible.

Hope your day was blessed. Thank you for checking on us and for continuing to pray for us. We'll talk with you guys later(its time to give meds. ugh!). Have a great evening. Trish