Progress

She had a little sponge bath and sat in a chair for about 45 minutes and it did a world of good. We will take down the oxygen to 31 % and see how she does. They had to take blood to run tests and they had to take it from her little foot. It was the only place she had a good vein. Her BP is down, praise the Lord. She is still so sleepy, which is crazy because she hasn't had any morphine since 4 am.

Coffee, I need coffee!!

Lina's saturation level dropped to 91 several times last night, as we sleep our body gets lazy. For most, we just keep breathing, but since she is so swollen she doesn't take deep enough breaths. Also, her blood pressure has been very high, and right now we don't really know why. We are going to give Tylenol with codeine and see if she will wake up! She has reached the peak of the swelling so as it goes down her vitals should stabilize. She is not herself. She has only asked to hold my hand a few times, and she hasn't really said anything for 2 days. On the way to the airport Monday morning she was a chatty Cathy and I asked her slow down, now I just want to hear her little voice say I love you!!!!! They say it is really cold outside, I don't want to leave until she wakes up, I don't want her to be alone. As I sit here taking inventory on life (not much else to do) so many things come to mind...I wish the road to becoming more like Jesus wasn't so long, but I guess it has to be so that we realize just how much we need him. I can't imagine how some of the people here get through these times. I know the Lord is with me, that is the only way I hold it together. Even when I doubt him, he never leaves, he never forgets, and he always loves. To my faithful friends, thank you, thank you, thank you. I love knowing that you are praying for Lina and I. To anyone reading---go hug your children, hold them tight and tell them you love them and you are proud of them. If they are grown, call them right now--tell them of story of when they were younger, and that you are proud of them, even if they messed up!!! I don't think we can tell a person, I love and appreciate you too much.

Oh my goodness!

Lina was in surgery for 9-10 hours. She came out extubated and the recovery room sent us to a regular floor. Not really the best plan. As we were getting ready to move her she began to vomit. We then went to the regular floor where the very sweet nurse said, "What? She needs to be monitored." So we met with the doctors from PICU and they agreed, as they were processing her move Laurie decided to put her on a monitor, not something they typically do on the regular floor, to find that her saturation was down to 92%. We put her back on oxygen and she was fine. Time to move to PICU, again she vomited. We got settled in ICU at about midnight, she had oxygen all night and we are beginning to take her off of it slowly. She is definitely in much more pain this time. I think this has been the Biggest, hopefully the last of the "BIG" surgeries. She is extremely swollen, her arm is ace bandaged to her body, she will leave with a sling, as she is not suppose to move her arm too much for 3 weeks (that should be fun-haha). She is sleeping now. As I look at her I just want to cry, I'm not as that won't do her any good, but she looks like someone beat the life out of her! Her right eye is swollen shut, she has bandages everywhere, only one drain this time, she has breathing tubes coming out of her new nose. She had two nostrils now. I want everyone to be prepared --- her nose looks funny right now. Dr. Rose used the forehead and turned the skin down so there is a turn in the skin at the bridge of her nose. She is a work in process! On our next trip they will nip and tuck and I'm sure it will be beautiful. Dr. Rose was extremely pleased with the outcome of this surgery. I have one of my most favorite nursed today, Gina. She has been growing her hair out for Lina and will cut and donate to Children with Hairloss very soon. Some of our friends from past visits have come by to say hello, Nicole, Jaimie, and Helen. I appreciate them so much. The small gesture of stopping by means more to me than they can imagine.
Please keep praying, there have been some changes to the sleeping arrangements for parents in the ICU. The chairs don't stay in a reclined position. No problem for a few days, but for all the parents here for months at a time----I pray a special blessing for them and their backs.
Thank you for calling, and blogging-I need the encouragement.

February 25,2008

A lot has happened since my last post. I am just not so great at sitting down at the computer these days.haha Susan you continue to be my inspiration. First, a few weeks ago we had Lina's IQ retested because of her hospital home bound status--her IQ is up by 20points, previously she was "mentally handicapped" now she is "normal". We had some additional test down which indicate that she has the capacity to raise her IQ even more as she understands more than she can communicate. Given her circumstances I think that is normal. She is working hard with me each day at her "home school". Hats off to all the moms that home school year after year, it is not easy. (yes that was to you Lea!) I really hope she is able to go back to school next year. I believe being home with one-on-one teaching has been of great benefit to her. Peggy, we are having coffee right now, how is yours?

We flew out of Tampa yesterday and had a great flight in. We circled NY for about 20 minutes, but the snow on the ground looked beautiful from the plane. We walked around Grand Central Station, what a beautiful place. The moldings are breathtaking and the ceiling is the stars mapped out. We went to the pediatrician, Dr. Larsen. I don't think I've mentioned her before, but a lovely doctor that always takes great care of Lina. She even visits us in the hospital without billing!! Then, the customary night before surgery....Hamburger. She was feeling uneasy last night, we cuddled in bed watching America's Family Videos and she fell asleep. She understands was surgery means now, I'm sad that she is scared, but also pleased that she is developing mentally, and paying attention to things she used to ignore. Bill brought us to the hospital and she started losing it. I told her stories, and talking about all the fun things we have done and she soon started being a chatty Cathy again. In the surgical waiting room we met Dr. Rose, at first she wouldn't even look at him, but shortly thereafter she gave him a little hug. I walked her into surgery and sang to her and told her I love her and she signed I love you to me. I think she will be in surgery for about 8 hours--today is a big day for change. He is rebuilding her nose, taking a flap from her forehead. He is also going to take away all the scar tissue on her "bad" eye and build it up with cartilage. He is also going to do some revision of the back where he took the first flap. He will also inject cortisone in the scars on her leg. After hearing all of this her only question was, "Can I have dinner?" I'd be asking, " Can I have some drugs?" To say she is amazing would be an understatement. I wish I could put into words the feelings I have for Lina. There are SO many emotions tied to her. The most important though is the love. John 15:12!!! Thanks Pamela for the constant reminder. We are so blessed!!! First, the Lord brought us to Lina, who would have thought this was the plan. Next, he led us to Dr. Rose. Then, to Bill and the foundation. His way truly is the best!!! Shelly and Joanne, thank you for your prayers, and I wish you were here too! Rob, don't worry about me!!!! You are so incredible and I love you and thank God everyday for you. Hannah, today is your first track meet. I wish I could be there to see you run and jump. Call me the second you get home to tell me all about it. Mary when are the auditions you spoke of? Keep practicing! I know you REALLY didn't want me to go this time, the Lord will bless you richly for your generous, loving, and precious heart. John I can see your sweet smile. Remember to exercise great self-discipline, and eat your veggies! I love you sweet boy. Thanks to everyone for the prayers. I have peace right now and feel his hand in all of this.