Ashley's Story

She will leave fingerprints all over your heart


Another Day

We survived the night with little to no sleep but none the less have survived. This morning around 6am Ashley Kate's bowel locked up from the scope yesterday and began to cause her some pretty severe cramping. This is not surprising to us because it usually happens since she developed the hernia around her stoma. It seems as though a loop of bowel slips into the herniated area as the scope is being removed causing things to lock up until the bowel returns to its normal position. The surgeon came in and placed her fingers inside the holes of her stoma in an attempt to get things moving once again. We won't know for a couple of hours if it was successful or not, but she was able to cause 40cc of stool to flow out. Thats a good sign. If it doesn't work then she is scheduled for a procedure at 2pm to slip a catheter into her bowel and insert some type of something to hopefully open it back up. This procedure is new to us. We've never had it done to her and we have been in this position several, several times before. They are using dilottid(?) and Lortab to control her discomfort.

The news from the biopsy is that her distal bowel shows no signs of rejection. It looks good according to pathology. The proximal bowel doesn't look near as good, but still they can't rule that is is ongoing rejection. There are signs of healing. Its just very, very slow healing and they are considering stopping the use of Rapimune(one the new drugs they added in October for immunosuppresion) because it is hindering the recovery of the bowel. I asked what our plan was and they said they don't have one yet. They aren't sure what to do and the surgeon will be looking over the slides along with the pathologist this afternoon before determining what course to take. So at this time we don't know much of anything except that it appears the bowel is trying to recover from the last 3 months of rejection. That is good news. How long it will take is anyone's guess. There is truly no way to tell.

In other news, we will be allowed to move to the floor. My head is hurting so bad from the lack of sleep since Friday evening that I'm having a lot of trouble keeping things together. I'm trying so hard not to be grumpy and disagreeable, but honestly I have never had a headache this bad. Ever. I was in tears as I begged our surgeon to please move us up to the floor so we could get some rest. She nodded her head and said, "They can go to the floor". Thank you, thank you, thank you. I can't wait to get to take a nap this afternoon. Ashley Kate has currently checked out on her pain medications and has beat me to it. So in the next couple of hours we should be moving to "our" room upstairs. You have no idea what a blessing it will be to get there.

Ash is back on TPN and no feeds. Starting over again. We're getting pretty good at it.

It has been a very tough fall season for us in the whole bowel department, but it has also been a very blessed season for our family. God continues to bring blessings our way and two of the hugest that stare me in the face are the holidays. I realize they were short lived times in our home, but they were quality times and you can't put a price on that. We were given Thanksgiving and Christmas and Ash and I were blessed to spend half of our trip with Dave and the kids. As I look back to how those events unfolded there is no denying that God's hand was directly involved. We enjoyed our time together in Florida and I have so much to share. There are literally over a thousand pictures that were taken and although I am working through them to share it is proving to be really difficult because I just haven't had any sleep in so many days. I promise to share a couple and write about some of our trip sometime tonight once I get some rest. Just looking at the pictures has flooded my heart with memories that bring smiles and tears to my face. It was a wonderful, wonderful experience to share with our kids. I am so grateful to have had that opportunity.

Dave and the kids just called to let me know they must have taken the wrong bus. They are on their way to the airport and aren't too happy about it. That made me giggle. Dave said the side of the bus said it was a magical express but as they pulled away from the resort it didn't feel very magical to them. They had such a wonderful trip. I look forward to the day when Ash and I will join them back in our little house in Texas.

I'm going to slip down and grab some soup while Ash is sleeping and then I'm hoping to hear that we are moving. Thanks for checking on us today. God bless. Trish


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