Some Time Away

With Olivia still under heavy sedation Bill and I decided to take some much needed time to spend with Aaron. My mom's sister Karen, who came down from Utah to watch Aaron for us, and my dad are watching over Livi today so that Bill and I could play with our son. We took him to a water park that our neighbors had taken him to yesterday. He loved it. It was fun to see him enjoying life so much.

Yesterday Livi had times when she was responsive. At one time during the day she opened her eyes to my voice and answered questions by shaking her head yes or no. Whenever she does this the first question we ask is if she's hurting. She fervently shakes her head no. We ask if she knows we love her and if she wants any songs or stories. She particularly enjoyed looking at a picture of her and Aaron together in a bath from our Sacramento home. I held it up in front of her to see, she reached out her hand, grabbed the picture and pulled it closer. The nurses have put a type of gel on her eyes so that they don't dry out, but when she opens her eyes it only frustrates her ability to focus. (Not like the drugs aren't making it hard enough already.) She'll squeeze your finger if you rest it in her palm and my dad says today she seems even more easily aroused. The sweetest thing was yesterday when she was answering questions and squeezing Bill's hand I nuzzled her nose. We've always given Eskimo kisses to each other and when I gave her one she returned the sentiment. I was thrilled at the amount of muscle/control it took for her to shake her little head back and forth so quickly. Later in the evening when I was saying goodbye I laid my hand on her left shoulder and kissed her forehead. She shrugged her shoulder up, tilted her head and squeezed my hand. Oh, the sweetness of an angel!

Bill stayed the night with Olivia last night. Bill's report this morning was that she remained stable and she is now on less of her heart medication. The doctors/nurses aren't looking so much for improvement right now as much as stability. So, since we're looking at 2 days under our belt of stable I guess we're doing well.

Some of you have been asking if anyone knows what we're looking at as far as time frame. I do not mean to shock anyone but I also am a firm believer in God's Plan. I believe that the sooner we let ourselves accept the His will, no matter what it may be, the sooner the Holy Spirit can offer us the comfort it is meant to give. Last night I asked her day nurse Lisa, who worked an extra shift yesterday just to keep Livi (it was her 6th 12hr day in a row), what her experience with this has been. She's very straight forward which I like. She said that she doesn't see many oncology kids in PICU because the really sick ones go home on hospice. She also said that she's had regular kids with pancreatitis that have been in for a month but they haven't been on ventilators. She ended by saying, she's "never seen a case this bad". This confirmed to me a couple of things I had already been preparing myself for. 1) Livi is TRULY very sick! The worst of the worst. 2) We are probably looking at being in the hospital for a couple of months. About Lisa saying the second thing, the doctors have not lead me away from thinking that, just none of them have said it so directly. I do feel that our doctors are being very open with us, which to me is refreshing not having had quite the same experience with my mom.

Now something that I thought was pretty cool and what I wanted to end with on this post. I've been asking the nurses how they feel about the different doctors that are working with us. Livi's night nurse, Angie, gave me great insight into our Oncologist, Dr. Bernstein. She said that she hasn't worked with him very often but knows that his families are precious to him. She also said that when the PICU doctors are stumped about a patient (not a cancer patient) and they don't know what they should do, alot of the times they bring in Dr. Bernstein for opinions and help. All the staff that we've met agree that he is a very smart man. He isn't shy about needing to find more information out and talking to his mentors, which happen to be the head guys for Leukemia treatment around the world. Rest assured we feel confident in the care that Olivia is receiving.

I will get another post on tonight, whether by myself or Liz about how today wrapped up. By the way, Great job on last night's post Liz!!!

THANK YOU EVERYONE FOR THE COMMENTS THE LOVE AND THE FOOD! Everything's been GREAT!