June 4, 2014 Day 32 I slept pretty well. It was so nice having Callie with me again. It has been WAY to long. I woke up around 5:30 am and called Jake to see how things were going. Lilly was given another dose of steroids as well as her blood transfusion. She was up every hour to hour and a half, but her pain was under control. I went back to sleep until 7:30am. It was SOOO needed. I wasn’t sure what we were going to do with Paisley and Callie today, so I text Morgan and she graciously agreed to help out. THANK YOU SO MUCH! Callie, Paisley, and I got ready for the day, stopped at Subway and headed to Westminster. When we got there, Morgan showed me around and the kids immediately started having fun. I have stated this before, but even though I only met Morgan a month ago, I am very comfortable with her. Today she was another tender mercy in our journey with Cancer. On the way back to Denver, Jake text me and told me that Lilly tested positive for c-diff. I immediately called Jake and was able to speak to the doctors as if I was there. They told Jake and me that they thought the c-diff had spread to her small intestine. They are going to be monitoring Lilly for 24-36 hours and see if the medicine does their jobs. They will then reevaluate. Unfortunately, this means we are still on isolation. Being confined to this tiny room has been less an entertaining. When I got to the hospital this morning, Lilly seemed to be doing pretty well. They are allowing her a clear, liquid diet right now. It is nice that she can eat, but it is defiantly not satisfying her. She keeps asking for a hamburger. I told her we had to ask the doctors and the she said, “Mom, if you ask the doctors and they say yes, can I have a hamburger, hotdog, French fries, and spaghetti.” All I can do is laugh. We saw our child life specialist again today and she brought Lilly in her “Bag of Fun.” She got all kids of fun stuff—including a leap pad 2, spider man lunch box, games, toys, etc. There are so many amazing programs out there to help kids in need. My little Lilly has been through so much and it was amazing seeing her smile. We also saw our social worker who is going to try and figure out a way for us to keep Callie. She sensed my anxiety about Callie’s well-being. Regardless of whether we figure anything else out, I am grateful she is trying for us. Other than the tummy pain and leg pain, Lilly is in alright spirits. Her pulse is now ranging between 120 and 150. She keeps picking at her left eye and saying there is hair in there. We did notice a few hairs on her shirt, so we are speculating that her hair may start to be falling out. It might also be a coping mechanism. Regardless, she is constantly asking for warm wash clothes and saline drops. Nothing else too exciting has happened. We are waiting for the doctors to come back in to help us clarify some things. I am planning on leaving around 6:00 ish to pick up Callie and Paisley and then will stay at the RMH the rest of the night. Please pray that Jake and Lilly have a restful night and for the medicines to work. We have been here almost 24 hours and are already to go home! Regardless we are GRATEFUL for the AMAZING staff at PSL!
Posted on: Wed, 04 Jun 2014 22:43:13 +0000
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