Good Morning

Good Morning from Ashley's room here in the PICU. We had a long night but are planning on having a good day. Ash would wake screaming throughout the night and we could not get her to calm down. She would be resting peacefully and then wake suddenly and begin screaming. You would think it was some kind of a nightmare, but our nurses decided she was probably having bladder spasms from her UTI. I have never had one, but I am being told that they are horrible and the burning is uncontrollable. They can't give her anything to help with the burning when she has to urinate so she just shakes and screams until it stops. We gave her tylenol to try and help with her discomfort, but it didn't touch it. This morning she has finally drifted back to sleep and I am hoping she gets in a good nap without any painful episodes. I know she is getting better because the screaming is no longer constant like it was last week.

We were given good news in rounds this morning. They will be turning off Ashley's TPN in the morning. We just increased her feeds to 40ccs and by midnight we hope to be at 45! This seems so unbelievable to me and it may not last long, but for now I want to express my thanksgiving. She is tolerating her feeds, and as far as I am concerned it is nothing short of a miracle in our lives. Her feeding issues since transplant have been so discouraging, and I know they may not be completely over but I can at least see some hope on the horizon. I am so grateful that her body is allowing the feeds to go in and stay down. I am really excited. We have no results from the biopsy. I am anxiously waiting to hear something back from somewhere. If they could just tell me that they don't expect it to be cancerous or that they don't expect it to move into her brain then I know I will begin to breathe a little easier. Just knowing that He won't give us more than we can handle brings peace to my heart, but the not knowing is proving to be difficult for me.

Last night Dave beat the pants off of Blake and Allie during monopoly. He called to let me know that his big brain was no match for the two of them and he bankrupted them both. Poor kids. You would think he would know by now that he is supposed to let Allison win. Blake would never accept a win without actually dominating the game so he would know if his dad took it easy on him, but Allie needs to win against those two guys every now and then. Anyway today is the crop a thon and Allison was so excited this morning. Her grandma picked her up and they have gone to do a little scrapbooking. I know she will have a great time. Blake has baseball practice all afternoon so you know he is thrilled. He promised to hit the ball to Omaha for me and Ashley to see so we will be waiting by the window. The weather forecast speaks of snow for us tonight. I wish the kids were here to enjoy it. I have decided to hibernate in our room all day and not come out. It is cold and I just want to snuggle this baby under our covers all day.

We are feeling blessed and excited about Ashley's feeding progress. We thank you for your faithful prayers on her behalf. I pray you have a great Saturday doing the things that bring joy to your hearts. Thanks for coming to Ashley's story today. We will check in later with everyone. God Bless. Trish