Friday, April 30, 2010
Wednesday, April 28, 2010
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.
Tuesday, April 27, 2010
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.
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.
Monday, April 26, 2010
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.
Saturday, April 24, 2010
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.
She has a fever that won't break and they don't know why. They have been culturing everything that they can to see if there is an infection or virus somewhere. They think that there might be an infection in one of her central lines, but it may be a false positive.
Janene is doing good down there so far. I pray that she has the strength to be there because she really wants to be with her baby, especially as Lydia is starting to wake up. The break yesterday was needed. Janene and I had some time to just relax yesterday and get our brains on straight.
I ask that we all say a prayer for the family of that boy I talked about the other day. They lost him that day. I don't know how the doctors and nurses do it. Our nurse said that she woke up the next morning and was having night mares about that boy, and she was just there like we were not even close by him.
Thank you all for your care. So many people have stepped in when we need it.
Friday, April 23, 2010
Brian's sweet mom is down there with Lydia today reading her stories and singing to her. I am so grateful for her love and support. My children have amazing grandma's!
Lydia keeps spiking a high fever and we don't know what from. They keep taking cultures, but so far there is nothing showing up. Her lungs and her blood pressure also keep struggling. My poor baby is having a rough time.
I'm thankful for Janene's remarkable recovery. She has done so well. Yesterday we met her sisters and brother for lunch before going to the hospital. It was good to see Janene having time with her sisters and enjoying being together. We then went to the hospital and she stayed there with Lydia and Brian. Lydia looks peaceful, yet it is hard for me to see her lying there so still, and wondering what she must be feeling or thinking. I love her so much. This morning Janene told me how hard it was for her to leave. She was crying and I don't know how to help take the ache away. I know one thing that I am learning is that even though we see the difficult things happening, there are just as many or more good things happening. I know we are being watched over and cared for by one who knows and loves us. He blesses us everyday, and I know this too shall pass and the sun will shine again for Lydia, Janene, Brian and all who they love and who love them .
Thursday, April 22, 2010
The emotional things today for me was at lunch. They have a parent lunch every Thursday for the ICU kids parents. It was hard to hear about the other families challenges with their kids. One family is going to have to move from Idaho to be close to the hospital for there new baby's medical problems. Another family was going to have to make the decision to pull the plug on their 18 year old granddaughter that has had medical challenges all her life. They lived at the hospital for 11 months once. The last thing put me over the edge. Right before I wrote this post there is a baby that was life flighted in. I went to the nutrition room for a drink. It is right across from the room that this boy is in. The whole ICU was there working hard to keep this boy alive. I could see it all through the window of the door. I couldn't help but stay there and cry for awhile like I am now. I need out of here. Our nurse said that the parents are in the room next door kneeling and praying while the doctors and nurses are literally running to get all the surgical equipment to do a surgery on this boy. I watched the doctor that did Lydia's transplant run past dressed in a suit change as fast as Superman into scrubs for the surgery and run back to the boys room. I am crying right now for this boy and his family.
Everywhere I look I see and hear of other children's problems and I know that Lydia has gone through a lot but I wouldn't trade for the hardships that the many other parents and kids down here are going through. I know that Heavenly Father gives us only things that we can handle. Obviously what Janene and I are going through is what we can handle right now. We have a long life to see what other challenges there will be. I pray that we can be strong enough to handle them.
I don't like to be in ICU. It is way too emotional.
Wednesday, April 21, 2010
My nausea is pretty much gone and I have been sleeping much better the past three nights. Wow, our bodies are so amazing. I know that Lydia can heal too.
At noon I came back from lunch and Lydia was awake. She was focusing really good on things. I got close and said hi and she looked the other way. So I went to the other side of the bed, she looked up and turned her eyes the other way again. I could tell that she was awake enough to be mad at me and she wouldn't look at me.
This was hard on me especially because yesterday, right as I was leaving her room to go home, she opened her eyes looked at me and started to cry really hard. It was torture to she her tears and whole body show that she was crying but no sound was coming out because of the ventilator. I could just hear some minoot bubbling sounds around the ventilator tube. I stayed and touched her face until she was sedated heavier and asleep again.
They took her to surgery just after noon. Her abdomen was still so big that I didn't think it was possible for her to be closed up at all. I just thought they would sew up the muscles a little bit and then put a new vacuum pack on. Instead they were able to sew her muscles up about 90% and then sew her skin all the way up. They weren't able to get the muscles sewn up 100% because of the size of the liver. This will just make it so that she has a little soft spot under her skin, which the doctor said is perfectly fine for the rest of her life. There is a possibility that she could have a stomach hernia from this soft spot. If she does it would present itself in a year or two. She already has a belly button hernia. They said that if that doesn't go away that they could fix both at the same time. We will see in a year or two. The doctor says that those are both a very minor thing and the least of our worries right now.
As long as the new pressures from sewing her up do not cause a problem this should have been the last surgery. So far all of her stats show that she is handling it ok. If she doesn't handle it then sometime early tomorrow morning they would have to open her up some again. Janene and I sure hope that doesn't happen. We were very happy and surprised to hear that they sewed her all the way up. We are praying that she can handle everything being closed up. The doctors are all happy and they feel that she is really going in a positive direction.
Thank you all for your fasting and prayers.
Love Brian and Janene
Tuesday, April 20, 2010
Monday, April 19, 2010
Janene came down with me today for her checkup and everything is good on her end. She was happy to see Lydia. She was able to read to her and clean up her hair from the glue from the EEG probes. She looks more presentable now even though she has been hanging out naked for the last week and a half.
Lydia was quite responsive today. She would open her eyes and follow movement a little bit. She is breathing on her own a lot more. There was one part of the day that she was fighting the respirator quite a bit until the nurse sucked out the gunk in her lungs.
All in all it was a good day. They are just going day to day until her liver is smaller. Then they will try to sew her up again. I am sure that will be a crazy day again.
Sunday, April 18, 2010
The more that I feel better, the more that I think about and miss my sweet Lydia. So much of my time before the transplant was with her that it feels like a huge void not having her here. I want to hold her, watch her play and laugh with her siblings, and just be my fun cute little lady here again. Friday is when I really started missing her so much. Brian went down to be with her early yesterday morning and he said I could go with him or he would come back and get me or whatever I wanted. He has been so sensitive and understanding to my needs as I miss her. I am so very grateful for him and the caring, hard-working, good husband that he is. He has been a rock through this. Because of my sleeplessness at night I have been sleeping late into the mornings so I didn't go down with him on Saturday morning. My parents called to tell me they wanted to go see her in the evening and wondered if I wanted a ride. I was really excited to go see her.
When she opened her beautiful eyes for me, it made my heart so happy. She kept them opened for an extra long time as I told her that Parker misses her, that Dallin misses her, that Alyssa misses her, and that Spencer misses her. We all miss her very much. We are anxious for her to heal, feel well, and come be home with us again!
I have my post-op appt. down there tomorrow morning so I am excited to be with her again. As for today, her sweet uncle Adam and sweet aunt Lorraine took turns being with her. They said she had a calm and better day than yesterday. I know I will never be able to start to repay everyone who has taken care of Lydia, me and the rest of my family. However, I want everyone to know that your love, service, and generosity, are noticed, and your FASTING, and PRAYERS are felt. We very much appreciate everything that has been done for us. We love you!
Saturday, April 17, 2010
Her other trouble today was that the IV team couldn't find any veins to put IV's in. Her feet have been very troublesome with IV's. The IV's keep blowing out of the vessels. They decided to change the central line in her neck from a two port line to a three port line. They said that there was going to be a little blood so I decided that because of her earlier trouble and my emotions they didn't need a grown man passing out on them. It is a lot easier to gut a deer and cut it up than see the blood of your own child. Her right lung for some reason collapsed a tiny bit at the bottom. They have been working trying to get the gunk out so that it will inflate entirely. She didn't do the best throughout the day. She has calmed down now and is ok and they are not planning on doing anything else to her today.
The doctor said that it just might be that we need a lot of patience in her healing process. That is probably why we are going through this trial so that I can learn patience. I am trying hard to learn that lesson and be a better man. I don't know how to explain my emotions and tears today. It hasn't been an easy day for me. Hopefully it is just one step back and then two, or hopefully three... steps forward. The good thing is that Janene will be here soon to come see her baby. It will be good for her to be her for just a short while. She wants so bad to see her eyes again.
Thanks for all your fasting and prays. Janene and I have felt them and they have lifted our spirits good and bad days like this.
Friday, April 16, 2010
On occasion her blood pressure has had some high spikes but then it drops back to normal quite quickly. This caused the medical people to think she may be having seizures, so they ordered an EEG to check that. She was on the EEG machine for about 5 hours today and according to the nurse there was nothing irregular with the test--so she evidently is not having seizures, which is a good thing. That still leaves the question of why is the blood pressure doing what it is. Hopefully whatever is causing it to spike is not serious. They removed the head wrap after they completed the EEG and she had tape and some gooey stuff in her hair, the nurse tried to get her hair back to normal but it's not quite there yet. I didn't have a camera so there are no pictures today.
Tomorrow morning she gets the shrink wrap and sponge bandage off. The plan is that they will partially close her up again--so I don't know if she will have another sponge and more shrink wrap or not after the surgery. Hopefully everything will go well with tomorrows procedure.
I very much appreciated all the medical people did for her today, I thought they were very attentive. It was nice to see them rubbing her face and gently talking to her while they were working on her. I hope she heard their kind words and my words of love for her too.
Once again, thanks to all who are helping in any way--that includes the many prayers being offered.
Linda C (Grandma)
Thursday, April 15, 2010
Janene slept better at home than the hospital. Maureen is there taking care of her now. I hope that some good rest and being at home with the kids will help Janene's spirits and get her better quickly. The bad thing is that two of our kids threw up last night. Not sure why but it was a good thing Maureen was there to mop up.
Lydia is doing better and still on the up swing. She is now off of all the diuretics. That means that her kidneys are doing all the work they are supposed to do. They are going to change her over to the normal respirator today. That will make it so that they can take her off of the paralytic medicine. She will still be sedated but her body will be able to do some small movement which will help absorb the water weight and push it out of the body the way it is supposed to instead of being vacuumed out. They plan to take her to surgery on Saturday to change her vacuum bandage and to sew her wound up some. They want to do this in stages so that her body can get use to having everything put back inside her. They can't just sew her up all the way until all the water weight is off and she is normal again. I imagine that she will be here another two and a half weeks or so.
Tuesday, April 13, 2010
Monday, April 12, 2010
Sunday, April 11, 2010
Janene is still doing ok. She has been batteling nausea and at times a lot of pain, but today she is up getting a shower for the first time and knowing Janene, getting cleaned up will make a world of difference for her. Her children will come to see her and Brian today so that will be a big thing for their little family to be together again, if only for awhile.
Brian has been so good. He will sit by Janene's bedside and massage her feet or back for hours. I know that it is very soothing and comforting for Janene. He also keeps things on the light side and makes us laugh, which is good, except Janene says it hurts to laugh. Both she and I couldn't help laughing when he accidently squirtted baby shampoo all over the front of his shirt.
Truly, I admire both Brian and Janene for being so positive through all this. Brian always thinks positive and that is such an admirable trait.
So again, we thank all of you all for your prayers and fasting, they are felt and working. We are especially grateful to our Heavenly Father for His many blessings on this very special Sabbath day.
As a side note, Brian and I attended Sacrament meeting here at the hospital and it was such a spiritual meeting. It only lasted a half and hour but the spirit was so strong, I was very grateful I had the opportunity to participate in the wonderful spirit that was there. Brian felt it too. The branch here also brought the sacrament to Janene's room. We are looking forward to a happpy day and wish all of you one too.
Saturday, April 10, 2010
(I found out later that Maureen was singing a little song to help Janene while she was on the potty. It was called Tinkle Tinkle little star.)
I put a lot of transplant pictures on the right hand side of the blog under the title pictures then transplant, or just click here http://picasaweb.google.com/cleadbc/Transplant#.
London's mom also put some pictures on her blog http://liverforlulu.blogspot.com/.
Thank you all for your fasting and prayers. We are not out of woods yet though. The transplant doctor calls a liver transplant a journey. There are many roads and bends in that road to follow. We just have to take the curves as they come.
Friday, April 9, 2010
It is really tiresome to watch them work on her to try their best to keep her vital numbers up. They have to be tired at the end of the day. I am grateful for their care. I get lost listening to them talk back and forth. It is a different language down here not English.
We will get to see and take pictures of Lydia's old liver most likely on Monday. The transplant doctor said that the incision of Janene's is the smallest he has ever done for a live donor. It is only about 4 to 5 inches long. I will have to persuade Janene for a picture.
This made it so she had to rely on the other pain medicine and that was causing so problems also. Basically she has been in a lot of pain and now they are changing the pain medicine to something else to see if that will work. She has hardly slept because of the pain. Hopefully this new medicine will help her.
Lydia is just sedated and sleeping well. She is starting to try to breath on her own more. It will really get hard when she wakes up and is in pain. Hopefully they can get Janene's pain worked out first. They should since Lydia will be sedated for a few more days most likely.
Thursday, April 8, 2010
The liver was leaking fluids and a little blood. This was causing pressure on the plastic bandage. They figured that they would need to go into surgery in the morning to relieve the pressure and wash out the gunk. They said that this was a common thing. There seemed to be too much fluid and the surgeon said he might have to come back earlier. A half hour after I went to bed. They came in and woke me to get my consent to go back into surgery to fix the leaking. I went to bed again and was woke up thirty minutes later to give my consent for anesthesia. Lydia wasn't doing as good then. Her heart rate was up and they were trying to do anything they could to get her comfortable. That was very real and hard to watch. That was probably the hardest thing for me during the day. I felt a real comfort about everything else but it is hard when it was visual and in the heat of the moment.
They got her under control and I walked with them as they took her to surgery. This was at 1 am. I knew it was just better I went to sleep than to just lay there awake. The surgeon woke me up at 3 am to tell me he was done.
They sowed the wound back up but not the muscle underneath so that there was enough room for the liver to shrink. They will have to open her back up again and get the muscles back into place then sow her back up some time in a few days.
I am trying to get pictures up but I am having some difficulties. Sorry it took so long to get this info up. The red color is the new liver behind the plastic bandage that is sewn on to the edges of the skin.
Wednesday, April 7, 2010
Basically everything is good, and everything went as planned.
Thank you all for your prays and all your help.
Janene will be out of it and not remember much the rest of the night. Maybe by morning she might be more with it.
Lydia will be heavily sedated for many days so that she is not aggravated by the breathing tube. They want her to stay very still while the wounds heal. They said that most likely she wont remember much if not anything about the ICU. That could last up to two weeks in the worst case.
From past experience they are both fast healers. Who knows though what this may be like. I hope it will be quick.
They have been coming out regularly to tell us that the process is going well. They have been working on getting Janene's piece of liver out for a while. They guess that it will be about 3 pm before she is all done. Lydia will be finished up later this night. We are not sure when they will be done with her.
My mom and Janene's parents are her at the hospital. Janene's brothers and sisters and spouses will be coming when they can today. It is nice to not be the only one here.
Lizzie, James, and London came and visited us today. It was a very welcome visit. They brought us a bunch of food and gave us a lot of comforting advise and hope for the future. It was so nice to see London's progress and see that Lydia can be a regular child again.
I will update more later. Thank you all for the many thoughts and prayers. We have heard from many of you and we are very thankful for everyone that is out there that are thinking of us.
Thursday, April 1, 2010
Our hearts are full of gratitude for the outpouring of blessings Heavenly Father has blessed us with, many of which have come through the dear people in our life. At Christmas time, we were told of a fund that was set up in Lydia's name unbeknownst to us. When the fund was closed we were overwhelmed by the generosity of those that helped us. We also recieved gifts and money on our doorstep several times by anonymous "angels". But it didn't end at Christmas time. A couple of months ago, we were asked by a 6th grade teacher if Lydia could be part of an annual "Save to Serve" dinner given by their grade. There were 3 other organizations also participating. I went to speak to the 6th grade students about Lydia's disease along with a representative of each of the other organizations. Then the students sold dinner tickets and collected items for a silent auction. The people buying the dinner tickets and donating the auction items picked Lydia or one of the other groups for the proceeds to go to. The dinner was held last Thursday evening. My mom stayed with Lydia in the hospital, since she was admitted that day, so Brian and I could attend the dinner. It was a fun-filled evening with good food and great entertainment. At the end of the evening we were surprised to learn that a great amount had been donated for Lydia.
When Lydia was in the hospital on Sat., several people from our ward came to clean windows and closets and help with other things help us get ready for the transplant. My mom has also been here lots cleaning and organizing too. It feels great to get things in order. The past couple of days my mom's twin and two of my uncles have come to help on house projects. We bought our house with the intention to fix it up quickly, but due a series of unexpected events we have a long way to go. One problem was an underlying skunk smell in the house that took several months to find the source and get rid of. I didn't notice the smell until after we had moved in. Brian had only noticed it faintly one time before we bought the house. Once we moved in we could smell it strongly. It turns out that 20 years ago when the people here went on vacation, they left their garage open slightly for the cat to go in and out. Instead a skunk family came in and made a home under the kitchen floor area. They sprayed and left feces all over the cement in the space between the kitchen floor and the basement ceiling. The lady who lived here before couldn't smell well so it didn't bother her. I am grateful Brian is handy and persistent enough to find the where it was coming from and take care of it. There were also several other fix-it projects that we discovered needed attention before we could change the 70's style decor of the home. Then, a few months after we moved in Lydia was born and our lives were changed drastically as our time and money was quickly refocused to her needs. The March Ensign magazine had an article about how the trials of life can come from our poor choices or by the natural effects of living such as illness. We seemed to have a strong dose of both at once since we bought this house that needed alot more work than we thought about shortly before we were blessed with Lydia and her challenges. I think we were needing to grow and learn more humility and faith. I don't know that I have learned what I needed to yet, but I have witnessed many miracles in our family and my love for Brian and our children has grown immensely.
Thank you all!