It has been a long day. I'm tired, emotional, and ready to go home. We think we will go home tomorrow. Oh I hope so. I've forgotten how bad hospital stays are.
The day started with the nurse waking me before 6am holding Lynlees IV in her hand. Somehow in the night she kicked it out. Of course she needed labs and an antibiotic so I was holding her down screaming all before 7am.
Lynlee had her procedure today. She did well. Everything went well. It was almost 2 hours long and after 90mins I could feel my heart racing. I hate waiting. She has a drain through her bile ducts into the intestine and a drain bag. The doctor sad there was then one duct had a narrowing and as far as they could tell that was her only problem. We will be back in 2 weeks for another procedure to balloon and go from there. They can't tell me how many times it will take yet.
In all honesty, I don't think I prepared myself for the drain and the drain bag. I knew it would be sticking out of the skin but didn't realize the bag would be HUGE and almost impossible to hide. I'm sad that Lynlee doesn't like it and knows it shouldn't be there. I don't want her to feel different but I can tell she does. She looked down at it today and in the saddest voice said momma no. My hear broke into pieces. I hate not being able to fix it when she is sad and doesn't like something. And Ryan and I have some decisions to make about school. I'm not sure she can go and play and be like the other kids with this hanging out of her body.
I can feel this post isn't my normal peppy self and well I'm not feeling that way tonight. I'm still so thankful that it isn't rejection but this is hard too. I wanted it to be nothing and for us to go home in a day or two and everything go back to normal. We are hopeful that this will be done in just a few procedures but have to realize it could be more than a few.
I do want to thank each of you for commenting on my Facebook post. I haven't had the time to respond but I am so thankful for you guys. And for everyone texting to check on us, calling, and for remembering Lynlee in your prayers. We are so blessed for each of you.