I purposely didn't blog last night. I knew if I blogged I was going to say that we were supposed to be getting discharged today (or going to the zoo as we've been saying in front of Lynlee) and I didn't want to have to tell everyone today that some fluke happened and we didn't get discharged.. Glad I saved myself all that typing because we didn't get discharged today. It's been a very long, aggravating, emotional day.
Until 11am today we were leaving. We had everything worked out, had next weeks appointments scheduled, we were heading to the Ronald McDonald for a nice cozy weekend. Then they had their rounds. Lynlee still has chronic diarrhea to the point they are worried about her getting dehydrated. They were going to just give her some Imodium (sp?) and let us go but the transplant doctors decided against it. They decided to stop her Emfaport (her feed she's on now) and go back to TPN. Yes, this a huge step in the wrong direction. But they are sure that's what's causing the diarrhea, and we can't go back to Pedisure since she still has Kylis in her tissues so that's where we land. The good news is they will release us on TPN. I'm glad they trust me enough to let me give my child IV nutrition because I certainly don't have RN after my name. After being on the TPN for 2 weeks the tissue in the liver should be healed and we will switch back to Pedisure. Whew, what a roller coaster.
The good news is the liver numbers are still normal. She's doing great with the lower Prograf level. We aren't here for any liver reason which is great. I'll take the small stuff. The new projected release date is Monday or Tuesday.
I've had a few people ask me if we've had regrets about the transplant. We went from never being in a hospital to being here for 3 weeks now. My response. NONE! Not one. We don't have the worry of ammonia or brain damage. This stuff here is just temporary. Lynlee seems to be a different person in a way. She seems to focus more, to listen more, that fog that was sometimes around her is gone. It's kinda crazy really.
So that's the update. We will get there. I kept thinking once we get released we won't have to come back, maybe?
The emotional part of our day came from another part of our life. When it rains it pours. But we are strong, and will get through yet this challenge. For now I'll just ask for more prayers over the next week or so.