She's been Scoped

Our day began at 7 am and we have just now walked in the door of our little yellow house with our youngest daughter in my arms. We have settled her into her bed and are now getting ready to settle ourselves. I had the privilege of hugging Blake and Allie this morning as they headed out the door to begin their day and the privilege of kissing them on their foreheads as they slept just moments ago. I can't think of another thing in this world that I would find more precious than those two gifts. God gave us another day.

Ash did well during her scope. The surgeon was not a GI man and didn't have much experience interpreting what he saw. He said as far as he was concerned it looked good. Very friable. That means red, inflamed, angry and bleeds to the touch, but he thought it was ok. I appreciated his honesty when he said he really didn't know what he was looking at and would just defer to pathology. We will have to wait for the results. Perhaps by Thursday? or Friday?

The Omaha team also ordered for a 24 hour urine collection. That meant that she had to have a foley catheter placed. They are hoping to determine how she is losing protein. Her albumin is very, very low again and they need to pinpoint a reason. Is it because the rejected bowel is leaking the protein through the walls? Is it because her kidneys are damaged from the Prograf levels and have begun to spill it. Is it from malnutrition because she obviously doesn't get enough nutrients and calories from her diet. I assume this collection of urine is supposed to give them answers or direction. Its a new thing for us. Something we have never had to do. The Shreveport team chose to place it while she was sedated so as not to cause her anymore stress today. You have no idea how much things like that mean to this mommy. To know that they are taking her comfort into consideration like that blessed me immensely. They also chose to allow me to bring her home with the cath and allow me to collect it and bring her back over tomorrow afternoon to have it removed. Again, their consideration of Ashley's comfort meant the world to me. They did not want her admitted to the hospital because of all of the bugs that are in the halls. They felt she would be much safer and more comfortable in her own home. I couldn't have agreed more. So I will happily sit up throughout tonight and empty her catheter every 2 hours and put it on ice so that she may rest in her own bed tonight surrounded by her own things. This team of doctors has been and continues to be a blessing. I am so thankful to have found them.

We spent 9 hours in day surgery waiting for her scope and I will share with you that I have never met a sweeter baby girl than ours. She was amazing. She was so thirsty and so very hungry, but never cried. She would give signs to me over and over again and I am sure she thought I had forgotten what they meant, but she did not fuss or complain. I love this sweet girl so much.

She is obviously uncomfortable tonight and doesn't look too interested in sleeping at this time, but she was SO happy to come home and settle in to watch Blue. As I type she is helping Steve and Joe find clues. It that's what makes her happy then so be it. I'll help her search all night long.

I feel so blessed to be home tonight. I believe we are at peace with our decision to have her scoped locally before returning to Omaha. Even if it only allows us a few more days here at home, it has been worth it. The feeling I had as we walked in our front door was overwhelming to my heart. Tonight the tears began to flow almost instantly. It has been a very hard, stressful, exhausting few days and the sights and smells of Christmas that are found inside of these walls truly touch me. I love my family. I love our home. I love this season. What peace my heart feels to be sitting here in the glow of the tree. To kick off my shoes and fall back onto the couch in the family room and know that we are safe for at least tonight blessed me. I'm scared about what tomorrow will bring and the next day and the next day, but for tonight I am home. Ashley Kate is safely tucked into her crib. Her daddy lay sleeping just a room away, and her brother and sister are lightly snoring as I type.

I'm trying to ground myself in the reality of our situation so that the return might not devastate me. It usually takes me a few days for it all to sink in and for me to get a grip on the whole return to Omaha thing that likes to haunt us. The signs all point to rejection. The symptoms aren't supportive of much else. Even so I have a nasty little habit of holding on to hope. Hope that the biopsy will support what we are wishing and hope that we aren't leaving anytime soon.

Thank you for continuing to pray and for continuing to be a constant in our lives. We are blessed to know you. Goodnight. Trish