Friday, April 30, 2010

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.

Wednesday, April 28, 2010

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.

Tuesday, April 27, 2010

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.

Monday, April 26, 2010

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

Sunday, April 25, 2010

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. 

Saturday, April 24, 2010

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.


We got to the hospital yesterday at 6:30 PM. Lydia was awake and very conscious. She saw us and started to cry. She gave me the cold shoulder for a little while but then she looked at me and wanted me. She didn't seem to give Janene the cold shoulder which was good. We stayed in there as long as we could. They have to kick us out for an hour from 7-8 during shift change. We had to leave her while she was crying a little. That was hard. I know that she needs to cry and move her body so that she can get strong and heal her lungs. It is just hard to watch.
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

Staying With Lydia

It was wonderful to be with Lydia yesterday afternoon even though it was an emotional time.  I love to touch her, look at her, kiss her, sing to her, read to her, talk to her and just be near her.  I'm looking forward to being there more and more as I'm feeling more and more better.  I'm going to stay overnight there with her tonight and Brian will spend some time here with the other kids.  Brian has been a real trooper being down there so much.  It really is draining, not that we would want to be anywhere else. 
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.

More thoughts from Grandma Peterson

This rollercoaster ride is getting too long and I think we are all ready to get off! Yet that may not be our choice and we have to stay on a while longer. Hope we can learn what we need to learn quickly so Lydia can be all that she can be. As I talked to Janene this morning and learned that Lydia is still struggling with fever, breathing and blood pressure problems my heart ached. It aches more for Janene. Janene wants to be with Lydia so much, I know how she must feel. Perhaps she will be able to spend more time with her soon, I think it will do them both good. I think Brian is incredible too. When I read his blogs and he says he is crying I cry too. I agree with Brian that it would be hard to be there and see the struggles of others. You don't have to look far to see someone else worse off than yourself. I was touched by how concerning the doctors and nurses were for that little boy.
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

Holding Even

The doctors were hoping for a hold even day. Lydia has held on decently all day from yesterdays surgery. She had trouble last night with a plugged lung. Her left lung collapsed last night because of, as the nurse put it, "buggers". They were able to clear her out and then the x-ray showed that she was better. She has had a fever all night also. There is just a lot of stress that her body seems to go through every surgery. Hopefully tomorrow she will be better and off of the paralysis medicine.
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

Hoping for Healing

Oh, it was soooo exciting today that she got sewn up all the way!  Come on my Lyds, HEAL, HEAL, HEAL!!!  Brian and I are hoping so much that her liver will shrink and everything will keep healing and function properly.  These next few days should tell us alot.  I get to go be with Lydia tomorrow. I can't wait!!! Parker said that he saw her in his dreams. He talks about her and misses her alot, too. We are all anxious for her to be well again. My patience for her to get better has been low. It's so hard to wait and wonder.
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.

All Sewn Up

Last night we got a call from the hospital. They wanted our consent to change the vacuum pack and do a partial sew up of the wound today. They said that the muscles need to start to be worked back together or it is a lot harder to get them to close all the way. This made me quite worried that today would be a hard day for Lydia.
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

Lungs Are Getting Better

Lydia had a good day today. Her lungs are getting better. The x-ray they took this morning shows that there is a lot less water in her lungs. That is their main goal through tomorrow is to try to reduce the amount of fluids in her body. They are now using the tube in her nose to her intestines to give her as many medicines that they can instead of through an IV. This will help shed water because it makes her bowels work. Any interior movements will help her body push the fluids to where it is supposed to go. She also had two stools last night. That is the first since the transplant. She is slowly getting better. The next few days they will just be waiting for her lungs to finish drying out and her liver to shrink. Then they will look at closing her up again. We are patiently waiting for her to heal.

Monday, April 19, 2010

Better Day

Lydia seems to be doing better. The doctors think that we are just dealing with the damage from her getting sick. The main damage is the wet lungs. They are trying to do everything that they can to get the lungs to dry out. Once they are dry they feel that the liver swelling will then be able to go down. They said that there shouldn't be any reversible damage from her sickness. It will just take time. It is amazing how interconnected everything is in the body.
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

Janene On the Mend

I finally feel up to looking at a computer so I just want to write a few of my feelings.  The past week and a half have felt like a long sickness to me.  The worst part of it has been the nausea that wouldn't let up, but the last day or two it has been getting better and better.  It has helped me appreciate ladies who get a lot of nausea being pregnant because I don't when I am pregnant.  I feel more grateful for my easy pregnancies.  My other post-op symptoms are pain, sleeplessness and easily tired, but the nausea definately has taken the cake. 
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

Rough Day

It was rough for both Lydia and I. It is very hard to watch her struggle. Today has been the hardest on me. They took Lydia into surgery today to sew her up some. Instead they just changed her vacuum pack dressing. Her liver is really swollen. The doctor thought that her liver was more swollen than before. She has shed a lot of water weight but the liver isn't small enough to start sewing her up. Her body was pretty distressed after the dressing change.
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

Less water is sometimes a good thing

Overall I thought Lydia looked much better that she did the last time I saw her. She has lost quite of bit of the water weight--I particularly noticed that in her hands and arms and legs and feet. She twitched her feet every now and and opened her eyes occasionally, it was good to see some movement. I was amazed at how much liquid is being drained off of the area around the new liver.

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

She Openned Her Eyes

They put Lydia back on the normal respirator today. After they did this they took her off of the paralytic medicine. She started to move and open her eyes. It was so nice to see life in her again. After she started moving she had some quick spikes in her blood pressure. They decided to be precocious and sent her down for a CAT scan on her brain and they hooked her up to 23 more wires to do a brain wave test. Basically they think that she was dreaming or something like that that was causing the quick spikes in blood pressure. These happened after they changed her pain medicine to morphine and took her off of the paralytic. They wanted to be precocious and make sure that it was not a seizure. The unofficial doctors reading of the test were that she is all right, and it was just the medicine change. Other than that she is doing good. Here are some pictures below.

Better At Home

Her are some pictures of her old liver before it was put in the solution to be preserved. A healthy liver doesn't have any green in it and it should be nice and smooth.

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

Janene is Going Home

Janene is going home. She still has nausea but is eating regularly now. She is ready. I will go home for a night with the family also then come back tomorrow sometime. We can't wait to see the kids. Someone will be at the house always to help her. She won't be able to drive yet or lift over a gallon of milk for four to six weeks.

Lydia is doing good. She is up on some things then down on some others every once and a while. They tried to put her back on the regular respirator today. She was doing ok on it but the doctor thought that she would be better if they gave her one more day on the special respirator so they switched her back. We will see tomorrow. If she gets off of the special respirator they can reduce the paralytic medicine and that will help her muscles to move a little which will help her body to get rid of the fluids faster.

We went to see Lydia's old liver. It is all green because of the preservatives they put it in. They are going to send us the pictures of it before they put it in the preservatives. It was definitely a sick liver. Her are some gross ones of it after the preservatives. Don't eat dinner while viewing this especially liver and onions. I even got to hold it. With gloves of course.

Monday, April 12, 2010

Day 5 Post Transplant

Lydia is doing better. She is really sick but she is on the constant up. I imagine that this virus is going to cause us an extra week of being in the hospital. Everyone asks how I am doing. I think I am numb to the whole situation still. I really felt like everything that has happened to get us here at this time was meant to be. I was ready for this to happen and now I am just at what ever happens happens mercy, which of course means the Lord's will. I think it will hit me when Janene goes home and I will be floating around the hospital with out a permanent room to put my stuff in except with Lydia or the car. I hope my mental break down doesn't happen then. I pray that it won't.

Janene went to see Lydia today. It was good to see her walking and trying to eat a normal meal. She has been told that she can go home tomorrow. We still are not sure how up to that she will be. Her eating and digestive system are still catching up. She has been totally unhooked from all monitors. They took out the wound drain yesterday. That is not cool to see something bigger than the hole is come out of that same hole. She didn't like that too much. Today they took out the vampire tap that was on her neck so now I will just have to suck her blood. She still doesn't like to laugh at my jokes because it hurts too much. That doesn't stop me because, as she calls it, she is so used to laughing on the inside about my jokes. Rarely does she laugh on the outside to make it hurt her.

We are doing good. It will be hard when Janene goes home. We will see what happens. My work is going to let me work from here when I can. If Lydia stays knocked out I should be able to get a few days in if I am up to it. Work has been very supportive of us and they even gave us a cell phone to use while we are down here. That has been a big blessing. Especially since I have loved not having one for so long. Everyone should try being disconnected some time it is very peaceful.

Thank you for your prayers and fasting. It is helping I have felt your prayers bring tears to my eyes. The nightly comments have also been caused many tears to flow. They are tears in a good way.

Love, Brian

Sunday, April 11, 2010

4th day post transplant

It is a blessed Sabbath Day! We have a little good news for Lydia. She is still very sick but they now know why one reason she has been so sick. They found out that she has Rhino Virus,which she most likely had going into surgery and they did not know it. Because they suppress her imunne system for the liver, she was not able to fight the virus. She also has had other bacterial infections. Lydia's lungs have always been very sensitive and so this was the worst time for her to have this virus. But, she is showing some signs of improvement and so we are very thankful for all the prayers that have been said for her. Her liver is now starting to make coagulation enzymes which is a good sign it is beginning to function. Her kidneys are also starting to produce urnine which is also a big step in the right dirction. They tell us she is still very very sick, but we are so gateful that it is turning in the right direction for now. What a tough road she has had to travel and it is not over yet, but again we are so grateful for the good news and we will hold on to that for now.
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

Post Transplant day 3 Part 2

They gave Lydia a big dose of her diuretic. It helped her urine output for the first hour. We still need to go check on her for the next few hours after that. I was doing the potty dance for both Janene and Lydia. Both went after a lot of coaxing. Now if Lydia's can just continue on her own.

(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

London's mom also put some pictures on her blog

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.

Love, Brian

Grandma and Grandpa's Visit to Primary Children's Hospital

Clead and I visited Janene and Lydia today at the hospital. Janene seems to be improving but is still having some difficulties. We are grateful for the improvement she has made. Lydia is another story. The doctor told us that her new liver is working correctly but that her kidneys and lungs are not. They had to take her back into surgery today and drain fluid off of her, they took 8 ounces of liquid out of her. She is very swollen everywhere and is not able to urinate on her own. She was on lacix prior to her surgery to try to keep her water retention down and they were hopeful that her kidneys would kick in after surgery. That has not happened so they were preparing to give her some lacix as we left and hope that will help her expel some of the fluid, if not they will put her on dialysis. She is on a ventilator which is like a third lung for her. They purposely have given her medication that has put her in a state of paralysis, so she is just laying there with the ventilator breathing for her and not moving at all and her abdominal area is wrapped in shrink wrap. She is a sad sight to see. The doctors and nurses seem to be very concerned and attentive to her condition. They said the condition she is in is not normal after a liver transplant. Once again we all thank everyone for their prayers in this families behalf, as you can see prayers are still greatly needed.

Third day post transplant

Brian and Janene asked me to post the update for today. It has been another day along the transplant journey with bumps along the way. Janene still continues do improve and has felt much better than yesterday. She was able to sleep well last night for the first time since surgery. Her biggest problem other than being very sore and tender on her right side, is getting the plumbing working in her body. She also tried to eat a little bit of a full liquid diet and it came back up, so she is fighting nausea, but over all she is doing well.
The Big bump in the road is with our little angel baby Lydia. They had to take her back into surgery this morning because of too much pressure from accumulated fluids in the tissues of her body. The felt the liver was putting pressure on her lungs and kidneys and the liver itself so they opened her up and put in a sponge like material on top of her liver with a suction attatched to it and then kind of shrink wrapped her or vacume packed her. So her abdomen is once again opened up. The hope is to relieve the pressure on her organs so they can perfuse better and start functioning better. They have had to put her on an oscilator ventilator which is helping with her oxygenation. The next step they are considering is to dialyise her kidneys to help get her lab values to improve. Her little body has some really big bumps to get over. We hope she can turn the corner soon and that she can start the healing process.
Once again we know she is in the best hands possible and we are grateful for all the prayers that are being said.

Thoughts from Grandma

It is the second day after transplant and I am so grateful to be here with Janene, Brian, and Lydia. It has been a blessing to have  such wonderful, caring nurses and doctors taking care of Janene and Lydia. Even with my medical background, I am amazed at the knowledge and skill these people have.  It is way over my head, yet I feel their true concern and desire to help them get better.
I won't deny that it has been an emotional roller coaster these past two days.  We have been blessed with comfort and peace, yet at times my heart aches to see my baby (Janene) in SO MUCH Pain.  She is such a stallwart and doesn't complain but you can tell and she says the pain has been great. I really am honored to be her mother and be in a postion at this time to be here with her. I hope it is helping Brian too by being able to be either with Janene or Lydia.I hope I am giving them both support because I l ove them so much. I'm grateful for the good relationship I share with Brian.  I'm sure he has plenty of "Mother in law" jokes about me, but he puts up with me quite well.
As Brian has already stated, Janene has had a very difficult time because of not tolerating the pain med she was on. Last night was really hard for her when she had a very bad reaction to it.  She is doing much better now and hopefully tonight she will be able to sleep, and tomorrow will be a bette day for her.
As for our little Angel Baby, Lydia is fighting her own battles. I still have a  real hard time seeing her laying there so still, and so swollen. I can't wait to see her angelic smile again. The doctors and nurses are working so hard to balance her meds to get her fluids in her body under control.  Her kidneys are not functioning as they should, and her lungs aren't working right. As one nurse put it  they are having to think outside the box with her because she isn't responding to their normal procedures. She is also fighting some infection. All in all they tell us she is OK, but it is concening to say the least. Again there is a feeling of peace and I am grateful for the faith in our Heavenly Father and know he is aware of Janene and Lydia and their needs and he loves them too.
I too want to thank all of you for  your concern, and for your faith and prayers. They are truly felt and I know they are being answered. So much has been done to help this sweet family, and my prayer is that in someway I will be able to pay it forward. Right now I'm just happy to be here with my two sweet angle babies and Brian.  Love Grandma Maureen

Grandma in her Smurfet costume.  It keeps her warm.

Friday, April 9, 2010

Day Three Part 2

Janene has been able to sleep some now. She is comfortable now. They had to put a drain under Lydia's liver. There was a little pocket of fluid there that was making it so that her lung couldn't fully inflate. Her breathing is better now.

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.

We wheeled Janene down last night to see Lydia. She wants to come down and see her agian today so we will do that later.

Day Three

Janene's pain is finally better. Hopefully she is asleep now. Maureen has been trying to get her calmed down and asleep. They changed her pain meds and it seemed to work. That was a bad long haul of no pain meds last night because of different issues. She is really strong. I would have been crying like a baby.
The doctors have been trying to get Lydia's balance of respiration and pressure on her kidneys and liver. There is so much fluid and the liver is so big that there is a lot of pressure on everything. The liver is doing more and more of what it is supposed to and everything is starting to re balance out like a normal body. It will take some time but it will happen.
They took the bandage off so that the wound can air out and not grow mushrooms under it. Here are some pictures.

Day Two

Day two was hard going back and forth trying to be in both places. Janene's pain is not under control. The medicine bulb that was inserted into the wound area was leaking out and not doing its job. It was at first ok but then it wasn't working.

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

Transplant Day Part 4

The transplant night was interesting. I finally got nervous after really seeing Lydia after she had some troubles. She was released with a big clear patch over her new liver. Everything was good except that the liver was too big. They can't cut it down to size because it causes more problems. They said that it is swollen because of the procedure and that it will shrink in the next few days. They have to leave the skin open with the protective clear plastic bandage on it while the liver shrinks.

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

Transplant Day Part 3

We got to go see Janene at 5:00. It is now 9 pm and she is very coherent. The Dr.'s told us at 8:00 pm that they are done and that they were doing an ultra sound on Lydia to check all the new blood vessels. Everything is good. She will be in ICU soon.

Basically everything is good, and everything went as planned.

Thank you all for your prays and all your help.

Transplant Day Part 2

They are now past the point of no return. They are now removing Lydia's liver, and they are closing up Janene's incision. Janene will most likely be done at about 4:30. We won't be able to go see her at the ICU until about 5:30. The doctors have told us that everything is going really well.

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.

Transplant Day

We are here. Janene has been very poised. If she is nervous it is hard to see it. She said that she is nervous. I am very thankful for her sacrifice. We got to the hospital about 7:20 this morning. We checked Janene and Lydia in as soon as possible. Janene went in about 9:00 am. That was when I finally broke down. I have had plenty of intermittent tears, but that was finally the real thing. Lydia was restless until she went in at about 11:30. She could tell something was up and she wanted a drink of water. Thank goodness for the wagons that the patients could ride in. When they came to get Lydia that meant that Janene's liver passed the visual inspection. Everything was then a go.

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

repaired again

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a favorite toy

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I took Lydia in for another central line repair yesterday.  We have not had the best luck with that line.  The home-healthcare nurse came in the morning for a blooddraw and when she flushed it after the draw, the line broke and it started leaking.  I think it was weak because it gets stretched alot when she scoots around on her bottom on the floor.  Gratefully, her awesome nurse, Corrine, called down to the E.R. so they were well prepared for us when we got there.  It went fast and smooth, except Lydia cried the whole time they were fixing it even though it didn't hurt.  For some strange reason people in yellow gowns and blue medical hats and masks always make her afraid.  Let's hope that's the last time she will see them for a week.

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!

chillin' and grubbin'

Spenc and Lydia enjoying some brocolli (at least the taste of it for Lydia since she just sucks out the flavor and spits it out)