March 30, 2006

Today has been a long, but good day. At 10:30 last night since Leah was trying to communicate and was very awake they decided to remove her ventilator. She was happy with that and was then able to talk. I think one of the first things she said was that she wanted everything out (meaning the tubes, etc.). The NG tube that they inserted while at surgery seemed to really bother her the most of all things. There are definitely some pain issues as would be expected. She is able to tell us what hurts and they adjust her morphine as necessary. She still has a catheter that gives her a continuous morphine drip and then gets more in an IV every two hours. We have had many, many conversations during the night as well. She asked several times where she was, so I know she was still sedated/under anesthesia to some degree, but everyone was rather amazed by how aware she was and continues to be. She has said that her scar (incision)hurts her and I can only imagine. It definitely looks like it hurts. Dr. Lawrence has been to see her twice today and thinks she is doing well. She was very insistent this morning that she get some milk, but she is on a clear liquid diet right now and was not happy about having her request denied. Eventually she agreed to sip on some Sprite and has now been OKd to have milk. They did remove her NG tube this morning and that did make her happier although she has moved on to request many other things be removed. So far, she has had no luck with that. Her chest tube is still draining, but minimally. They feel it will be Sunday before that will be removed. Dr. Rahdi was also here this morning and thought she was doing well. He seemed happy with how surgery went and said that everyone in the clinic was very happy when they heard about her surgery. In addition to Dr. Rahdi and Dr. Lawrence, there are several other doctors that round as well as the Pain Management Team and ICU team. Our nurse told us how happy she is to have a responsive patient who can articulate what hurts and how she needs help. That seems rare for the PICU. There was talk of moving us to our normal unit today and out of PICU. Chris and I would rather stay here where they can watch her a bit more closely, but by tomorrow we are sure we will be kicked out. She really is doing quite well overall.

We hope her recovery continues to go so smoothly but also know that different things could occur that would slow us down. In addition we still have four more rounds of chemo and "then we'll see" what we may need to do from there. So, keep praying for Leah's continued healing and for her treatments to continue to be effective. They will check her AFP level again and that, too, is another critical number that we need to drop significantly.

For today, though, we are quite pleased with what has transpired and thank everyone for the prayers and emails, cards, and messages.