Best Therapy Ever

Yesterday was a special day. Everyone had been trying to get a smile out of Lydia. Around 6:30 pm I think I got a small smile out of her by trying to tickle her neck. It wasn't much. I knew in my hart that she wouldn't smile until the kids came. We asked the charge nurse if our kids could come see her because it has been 3 weeks in the ICU. She gave us special permission. It was the best thing I have ever seen. She finally smiled. She did more than that. She laughed, wiggled her whole body, and shook her head back and forth. It truly was the best therapy that she has had here in the hospital. The kids stayed for an hour. We sang together Dallin and Spencer read her books. She absolutely loved every minute of seeing the kids. Everyone was crying when we sang Families Can Be Together Forever. When the children and I left Lydia cried hard. It was one of the most special family moments that we have ever had. I know that there needs to be rules but I think therapy like this can't replace anything else. It helps people heal when they are happy. As silly as it sounds, it is like the Monster's Inc. movie. Instead of scaring people to get their scream for energy they find that making people laugh is an easier way to get even more energy. I feel like the one hour she had last night will give her the energy to finish healing. She was so docile until they came. Janene said that she was able to still get her to smile and move more later last night. A smile and a laugh last a long time in a persons memory. A lot longer than a frown or grumpiness. I pray that I will never forget this special experience and that it will help me to overcome and grumpiness and frowns that want to creep onto my face.

I posted some new pictures and vidoes of Lydia smiling, laughing, and wiggling on the transplant link on the right side of the blog. Or, you can just click here on Transplant.

New PIC Line and Drain Tube

Lydia's day wasn't so good. She had to get a PIC line this morning, which was good and needed for her future feedings at home and medicine now, but it is just another procedure that makes it hard on her. Her x-ray this morning showed that she had a pocket of fluid back where it was before under her right lung. When they put the PIC line in they also put a drain in her side again. They have sucked out about a pop can of fluid. Hopefully that will help her lung have room to breath. She has had major withdrawals. They have been trying to get her off of morphine by using another medicine. It is not doing the trick so they are having to give her some more morphine every once in a while when she is uncomfortable.
She has been breathing really fast since they took her off of the ventilator. She hasn't had much rest because of the labored breathing. She has been sleeping a lot today to make up for that. I hope she sleeps through the night with how much sleep she has had the rest of the day.
Janene didn't get to hold her because Lydia was uncomfortable last night and all today. She went home tonight to get some sleep. We will be trading here and there so that we can be with her as much as we can but still balance the needs of the kids at home. So many people have been helping us to make this possible. Thank you all.

Respirator is out and we can hold her

She got the respirator out today. They changed their mind because they weren't going to do it earlier today. It is so nice because we are now able to hold her. I have been holding her for two hours. It has been a long time. When Janene found out that she would be able to hold her I knew she would want to be down here. We were able to work it out that my mom could be with the kids, and Janene is coming down to stay the night with me and Lydia.
Her central line came out so they are trying to get another central line or PIC line in. They are trying to decide that now. Janene will have to wait to hold her until after the line is in and after the shift change. She can't wait.
Lydia just sat on my lap for two hours and watched The Fox and the Hound. She loves animals. I haven't been able to get her to smile yet. Which I can't blame her. I doubt that she will smile until she sees Spencer again. He is the one that has always made all of our kids laugh.
We just hope that she doesn't get an infection from the central line problems that she has had today.
It sounds like we are going to get a date tonight. I get to treat Janene to dinner and a movie at the hospital with Lydia in Janene's arms. I am excited. I miss her every time we are apart.

Medicine Withdrawls

Brian and I both went down to spend the day with Lydia yesterday morning.  Brian is planning to stay down there for a couple of days.  Brian's work has been so great to let him work from the hospital  while Lydia is in there. I came back home in the afternoon to be with the other kiddos, then we'll trade again probally tomorrow. I was supposed to see my surgeon yesterday for a post-op check-up but he was doing another transplant.  This made me feel happy for the recipient.  I am very grateful for Dr. Vanderwerf's knowledge and skill that he uses to help save Lydia's and so many others lives. 
Lydia continues to do well.  She was resting much more peacefully yesterday and Sunday than she had been the previous few days.  Maybe it's because her fever has been so much better.  Brian said that she had a restless night last night though.  The nurse said she had many of the signs of withdrawl from the morphine she has been on so they are going to try weaning her slower.  As I talked to the nurse about this, she said that Lydia will likely be weaning off of this for months at home.  She is still having a lot of secretions so they are not quite ready to extubate her breathing tube yet, but her lungs are still doing great.
Yesterday I recieved an email from a dear friend of mine.  She told me that she was especially touched by the 4th and 5th verses of the Hymn she sang in chuch on Sunday.  The Hymn was "How Firm a Foundation". These verses say:  4. When through the deep waters I call thee to go, The rivers of sorrow shall not thee o’erflow, For I will be with thee, thy troubles to bless, And sanctify to thee, and sanctify to thee, and sanctify to thee thy deepest distress.  5. When through fiery trials thy pathway shall lie, My grace, all sufficient, shall be thy supply.  The flame shall not hurt thee; I only design Thy dross to consume, thy dross to consume, Thy dross to consume and thy gold to refine."  That is one of my favorite Hymns, but the words to those verses were especially meaningful to me and opened my emotions as they really hit home right now. There have been times over the past year and a half when I have felt like I was barely hanging on by a thread and that I would fall at any moment. I didn't know if mine and Brian's marraige was going to survive the tumoil in our lives that didn't just include Lydia's health problems but other major stresses as well. As verse 4 talks about, my sorrow was sometimes so great that I thought it would overflow. But, with Heavenly Father's help it didn't overflow and over the past few months, I have felt an overwhelming outpouring of strength, peace and blessings upon me and my family.  Just when I thought I was going to break, Heavenly Father lifted me up and has "blessed and sanctified me in my deepest distress"(verse 4).  Many kind people have told us that we are handling this time really well and have been amazing through this.  I don't feel amazing at all though, I just feel extremely blessed by the grace of our Heavenly Father.  I know that I am only handling it because of the comfort of His spirit, the strength He has given me,  the atonement of my Savior, and all of you "angels" He has put in my life to help us.  I am so grateful for and eternally indebted for the Savior's atonement in behalf of Lydia, myself and my family.  How blessed I am to have the gospel of Jesus Christ in my life.

Closer and Closer

We are getting closer and closer to getting out of the ICU. She got the drain tubes out today. They have been trying to take her off of the respirator by doing some tests of turning the machine off and letting her breath on her own. They think that tomorrow or the next day they should be able to take her off the respirator. Then it usually takes a day or so after taking her off of the respirator for her to leave the ICU. Hopefully by the end of the week she will be in a regular room.
She is doing better and better each day. She is back to normal on the diapers. She still blows out of her diapers. They are giving her more and more food through her tube to the intestines. Hopefully when she gets home she will learn how to eat normal quickly.
I will be here a few days giving Janene a break. We want to be here as much as we can while she is starting to wake up and recognize who is around her. We thank all of you that have been helping us to make it so that we can be here as much as we can. Thank you all.
Love, Brian

A Few Days With Lydia

I have enjoyed a couple of wonderful days at the hospital with my Lyds!  She was awake alot yesterday and Friday night.  I loved seeing her beautiful eyes as I talked with her and sang to her.  She was asleep most of the day today though.  Hopefully her body is working to fight the infection that is causing the fever.  The fever broke for a little while this morning but then came back.  Her lungs are doing super!  They have been weaning the ventilator pressure more and more.  She has a lot of secretions that need to subside, then they will work on getting her off of the ventilator.  That will be another big step in the right direction.   I am so grateful that she continues to improve in more ways.  My mom went down to stay with her this afternoon.  Brian and I will go back tomorrow morning. 

What's your favorite song Lydia?

I had the opportunity to be at the hospital with Lydia all day on Friday. It was good to have her awake as much as she was and moving her legs and getting a little exercise. I read to her, sang to her, and carried on one sided conversations. I kept saying I wish you could tell me what your favorite song is so that I could sing it for you. I hoped that she cared that I was there with her and toward the end of the afternoon, I was out of the room for a few minutes and she woke up and started to cry, apparently because she couldn't see me in the room, when I returned and talked to her and rubbed her feet and legs she calmed down. I was glad that I could give Brian and Janene a break from this overwhelming responsibility they have been living for so many months.

I got to spend several hours today with Brian and his and Janene's other four children as it was my piano recital day and both Spencer and Alyssa are two of my piano students. It was nice to see Brian more relaxed and for the children to have the opportunity to play with their cousins for a few hours after the recital. I might add that I was proud of them for the way they played their songs on the recital.

It is good that Janene is up to spending time at the hospital with Lydia so soon after her own surgery--that is a wonderful blessing for both her and Lydia.

Once again, thank you to everyone for your thoughts and prayers in behalf of this family, they are felt and appreciated. Please pray for the medical people to be inspired to find the cause of Lydia's fever so that they can treat the problem and not just the fever. Most things that are given to reduce fevers have a negative affect on the liver and that is the last thing that she needs right now.