Thank you all for your love, kind words, cards, flowers, hugs, meals, and so much more. Your support has carried us through a most difficult time. How can we thank you enough? How can we repay you? The truth is that we can not. Please know though, how grateful we are.
What a tribute and honor to Scott! I really can't believe how many people attended the services for my brother. Thank you for being a part of our lives and rallying around us when we needed it most.
I have always loved "living in the city" but seeing the support from Scott's little community was inspiring. You just can't know people that well in "the big city" and I was a little envious. Tremonton/Bothwell my childhood home, thank you for loving my brother and our family so much.
It has been an honor to write this little blog. I've loved it and I've hated it. I appreciated your kind comments about the blog. You've only got to hear one side of this story, my perspective, and I hope that I have done it justice.
The words would sometimes flow like water from the sink, but other times the words just could not be written and I struggled. There are gaps and missing chapters in this little story of Scott's when I just couldn't get the words out.
I think all of us feel a gap now. A part is missing. Something not "right". And once again, words can't describe it. I feel a sadness I have never experienced before. I have grieved before and mourned the loss of a loved one, but this is different. Like my Mom said, "I'm not sad for Scott, but I am selfishly sad for me" I am incredibly sad for all of us that have to live without Scott.
I feel like a different person than I was six days ago. I wonder if other people, strangers, can see the sadness that hangs over me. I wonder if they sense that something isn't "right" with me. I wonder if there will be a time, when I don't cry so easily. I wonder if I'll be able to fall asleep without thoughts of the tragedy we've been through consuming my mind. I wonder if the ache in my heart will ever be lessened. I wonder if losing Scott will ever get easier.
I am desperately clinging to hope. I see my children and can't help but know, that despite my protests, life will continue to go on and there is so much to LIVE FOR! I see our sweet McCall our little angel, and despite the sadness I can't help but smile. Our family will always mourn, always miss Scott, and will always wonder about the what if''s and the why's but however small, there is a place in me that knows we are going to be okay.
Thank you so much for following along, for reading my words, and most importantly caring so much about Scott.
Much Love,
April
Psalm 34:18 The Lord is nigh unto them that are of a broken heart; and asaveth such as be bof a contrite spirit
Wednesday, December 5, 2012
Friday, November 30, 2012
Scott's Obituary
Scott Douglas Newman
1971-2012
After a hard fought battle, Scott Douglas Newman died of
Alpha 1 Antitrypsin Deficiency on 30 November 2012 .
He was born in Logan ,
Utah 12 February 1971 to Douglas and
Tamera Crozier Newman.
Viewings will be held at the Tremonton West Stake Center on Monday 3 December, from 6-8:00pm and Tuesday from 9:30-11:30am. Funeral services 4 December, at 12:00pm at the Tremonton West Stake Center Chapel. Burial at Valley View Cementery in Bothwell, Utah
Scott Newman
Scott RAN into the arms of a loving Heavenly Father and many family members who love him so, just now.
Scott--We are so happy you will not suffer anymore but heartbroken to have to live without you. We love you and will miss you everyday. Save us a spot and help us be happy until we can be with you again.
Scott--We are so happy you will not suffer anymore but heartbroken to have to live without you. We love you and will miss you everyday. Save us a spot and help us be happy until we can be with you again.
Thursday, November 29, 2012
Memories of Scott
When I started this blog, I truly thought it would be a documentation of Scott getting a liver transplant and a "happily, healthy ever after." As you know, that is not meant to be and the ending will be much different then I thought. I knew there would be obstacles, bumps in the roads, struggles and that writing those would be difficult, but this, this is indescribable.
I'm not sure I'm cut out to write a grief blog, a my brother is dying blog. The words I want to write are sad, depressing, and sometimes the things I think aren't very nice or spiritual.
Scott has life in him still. But THIS IS NO LIFE.
He is essentially unconscious. He does not respond to us talking to him. When we tried to re-position him last night, he did make some moaning noises that would literally BREAK YOUR HURT (and did ours).
He has not eaten or drank anything for over two days now.
He is so swollen. His eyelids and lips are puffy.
He is working very hard to breath now. He is breathing noisily and those breaths appear labored and difficult.
I spent yesterday evening and last night at Scott's place. It was so sad but also parts of it were "nice" We sat around Scott for most of the evening and told him we loved him. We shared our favorite memories of Scott with one another and I'll share some with you.
From our Mom:
Scott got to play little league baseball before any other boys his age because his birthday falls early in the year. Mom and Dad were so proud of their little athlete. Most of the season...he sat on the bench. One particular game, Scott got to play and was sent out to right field...you know the place where generally there isn't a whole lot of action. Finally, a ball was hit straight to right field. Everyone looked for Scott but could not see him anywhere on the field. Mom finally spotted him at the swings, swinging away.
Scott went to his first day of school. He didn't love it. He came home and told Mom and Dad that "the farm needed him more" and he wouldn't be attending school anymore.
From Shaylie:
Scott and Shaylie were driving home from Logan. Scott immediately turned the truck around and said he needed some radishes. These radishes were growing in a field they just passed... He told Shaylie to get out and dig up some radishes for him. The digging tool he gave her---some pliers! Shaylie said the radishes were about a foot under and there she sat digging up radishes, with pliers, while Scott smiled from the truck. Shaylie didn't know that Scott knew who's field it was and was getting a real kick out of this. She extracted the radishes and brought it back to her Dad. Scott took a big bite out of it and insisted Shaylie do the same.
From all the kids:
One year for Christmas, the kids had been arguing and fighting. They were still quite young. Scott decided that they would only be getting coal for Christmas. Despite Janiece's protests on Christmas eve Scott didn't put out the kids toys and real presents. Instead he had a large sac of coal that the kids woke up to Christmas morning. After a few tears from the girls, with a huge smile, and big laugh Scott let the kids in on his little joke.
From Janiece: (and a few others)
Scott was terrible at keeping secrets! He just was too excited to keep his surprise inside. He couldn't wait to ask Janiece to marry him once he got that ring.
From Me:
When Shaunie was only a few years old, I was babysitting her at Scott and Janiece's house. They had a little bum lamb outside. I looked out the window and saw that somehow that little lamb had gotten out of his pen. I opened up the door to try and catch the lamb and it ran right into the house! I finally got it out, but I did not want Scott (or anyone) to find out about this little escapade. I triple checked that there were no signs of lamb entry and thought that I could keep my secret. However, when Scott came home, I was just sure that somehow, sometime he was going to find out. I had to tell him and I did. He laughed and smiled and said "Hell April, I told you to tend Shaunie not the lamb!"
From Cody (Janiece's brother):
Cody told us a great story of Scott helping him train a colt. I'm afraid I won't get the details correct, but I will try. But if you see Cody, you need to hear his version. Scott and Cody were training a colt named Misty. Misty reared up and threw Scott off. Cody was holding on for dear life to Misty's reigns and finally got her settled down. Scott jumped up but said "he had had enough" They got ready to leave when they saw a neighbors horse get out and run up the road. Cody got on Misty and rode after the neighbors horse. Unfortunately the neighbor's horse was hit by a truck. Scott was close behind and of course even though he "had had enough" they got the trailer and stayed for a long time helping out the people involved in the accident. That was Scott-always willing, always there to help.
From Deb (Janiece's Mom):
When Scott and Janiece were dating, the Coombs were having party up at Grandpa's Grove. There was a large rope swing that overhung a lake. You could swing out and drop into the lake. Scott jumped on the swing...but he didn't let go. He swung back and smacked right into the tree. Deb, thought Scott had to be dead. Scott couldn't stop laughing.
There were many moments of happy remembering last night. But I also experienced one of the saddest moments of my life. I know that whenever I think about it, I will cry. A mother's love for her children is one of the strongest emotions on earth, I believe.
Scott stirred a little when my Mom, Dad, Melissa and I were huddled around him. We started telling him how much we loved him. My Mom, crying, bent down and kissed Scott and said "You've been a good son"
From one of my favorite Children's Book:
"I'll love you forever
I'll like you for always
As long as I'm living
My baby you'll be"
If any of you have memories of Scott you would be willing to share, we would love for you to write them here under the comments. It brings some happiness into this dark world of sadness for all of us.
I'm not sure I'm cut out to write a grief blog, a my brother is dying blog. The words I want to write are sad, depressing, and sometimes the things I think aren't very nice or spiritual.
Scott has life in him still. But THIS IS NO LIFE.
He is essentially unconscious. He does not respond to us talking to him. When we tried to re-position him last night, he did make some moaning noises that would literally BREAK YOUR HURT (and did ours).
He has not eaten or drank anything for over two days now.
He is so swollen. His eyelids and lips are puffy.
He is working very hard to breath now. He is breathing noisily and those breaths appear labored and difficult.
I spent yesterday evening and last night at Scott's place. It was so sad but also parts of it were "nice" We sat around Scott for most of the evening and told him we loved him. We shared our favorite memories of Scott with one another and I'll share some with you.
From our Mom:
Scott got to play little league baseball before any other boys his age because his birthday falls early in the year. Mom and Dad were so proud of their little athlete. Most of the season...he sat on the bench. One particular game, Scott got to play and was sent out to right field...you know the place where generally there isn't a whole lot of action. Finally, a ball was hit straight to right field. Everyone looked for Scott but could not see him anywhere on the field. Mom finally spotted him at the swings, swinging away.
Scott went to his first day of school. He didn't love it. He came home and told Mom and Dad that "the farm needed him more" and he wouldn't be attending school anymore.
From Shaylie:
Scott and Shaylie were driving home from Logan. Scott immediately turned the truck around and said he needed some radishes. These radishes were growing in a field they just passed... He told Shaylie to get out and dig up some radishes for him. The digging tool he gave her---some pliers! Shaylie said the radishes were about a foot under and there she sat digging up radishes, with pliers, while Scott smiled from the truck. Shaylie didn't know that Scott knew who's field it was and was getting a real kick out of this. She extracted the radishes and brought it back to her Dad. Scott took a big bite out of it and insisted Shaylie do the same.
From all the kids:
One year for Christmas, the kids had been arguing and fighting. They were still quite young. Scott decided that they would only be getting coal for Christmas. Despite Janiece's protests on Christmas eve Scott didn't put out the kids toys and real presents. Instead he had a large sac of coal that the kids woke up to Christmas morning. After a few tears from the girls, with a huge smile, and big laugh Scott let the kids in on his little joke.
From Janiece: (and a few others)
Scott was terrible at keeping secrets! He just was too excited to keep his surprise inside. He couldn't wait to ask Janiece to marry him once he got that ring.
From Me:
When Shaunie was only a few years old, I was babysitting her at Scott and Janiece's house. They had a little bum lamb outside. I looked out the window and saw that somehow that little lamb had gotten out of his pen. I opened up the door to try and catch the lamb and it ran right into the house! I finally got it out, but I did not want Scott (or anyone) to find out about this little escapade. I triple checked that there were no signs of lamb entry and thought that I could keep my secret. However, when Scott came home, I was just sure that somehow, sometime he was going to find out. I had to tell him and I did. He laughed and smiled and said "Hell April, I told you to tend Shaunie not the lamb!"
From Cody (Janiece's brother):
Cody told us a great story of Scott helping him train a colt. I'm afraid I won't get the details correct, but I will try. But if you see Cody, you need to hear his version. Scott and Cody were training a colt named Misty. Misty reared up and threw Scott off. Cody was holding on for dear life to Misty's reigns and finally got her settled down. Scott jumped up but said "he had had enough" They got ready to leave when they saw a neighbors horse get out and run up the road. Cody got on Misty and rode after the neighbors horse. Unfortunately the neighbor's horse was hit by a truck. Scott was close behind and of course even though he "had had enough" they got the trailer and stayed for a long time helping out the people involved in the accident. That was Scott-always willing, always there to help.
From Deb (Janiece's Mom):
When Scott and Janiece were dating, the Coombs were having party up at Grandpa's Grove. There was a large rope swing that overhung a lake. You could swing out and drop into the lake. Scott jumped on the swing...but he didn't let go. He swung back and smacked right into the tree. Deb, thought Scott had to be dead. Scott couldn't stop laughing.
There were many moments of happy remembering last night. But I also experienced one of the saddest moments of my life. I know that whenever I think about it, I will cry. A mother's love for her children is one of the strongest emotions on earth, I believe.
Scott stirred a little when my Mom, Dad, Melissa and I were huddled around him. We started telling him how much we loved him. My Mom, crying, bent down and kissed Scott and said "You've been a good son"
From one of my favorite Children's Book:
"I'll love you forever
I'll like you for always
As long as I'm living
My baby you'll be"
If any of you have memories of Scott you would be willing to share, we would love for you to write them here under the comments. It brings some happiness into this dark world of sadness for all of us.
Tuesday, November 27, 2012
Feeling Sad
Scott gets a little worse everyday.
He is not eating or drinking much any more. He has a very difficult time swallowing most of the time. Hospice has asked us to not give him anything to eat or drink, due to his high risk of choking. Of course, if he asks, we do our best to help him get it down. He is having a very difficult time swallowing the medications he is given to help him be comfortable. The nurse commented yesterday that he is starting to show some signs of dehydration.
He continues to be very swollen and is swelling more on whatever side he is turned to or leaning towards.
He ran a fever the other night and was drenched in sweat, but that seems to have resolved now.
He is very jaundiced. The whites of his eyes are now completely yellow.
He did get up out of bed yesterday and shower. This completely exhausted him and he didn't get out of bed for the rest of the day.
He sleeps most of the time and when he wakes most of the time he recognizes people. However, for the first time ever, he did not recognize immediate family recently. Our cousin Tommy came to visit and Scott recognized him and called him "Tommy Tinker" which was the nickname Scott has always called Tommy. It made me smile when I heard that and feel sad at that same time.
Part of me wants Scott to be completely unaware of what is happening to him. I've asked my Mom many times throughout this if she thinks that Scott realizes or understands that he is dying. (Maybe my real question is does he accept this???) My Mom does not believe that Scott does really know that he is dying. Mom has said a few times that Scott is young and that the human body just naturally wants to live--to survive. This thought is incredibly hard, something I have struggled to process. I think her statement is true. I just really pray that Scott is truly comfortable and feels peaceful and there is not some inner turmoil. It seems so cruel. I know we have a loving God, but man, I just don't get this. I have to tell myself and believe that somehow God is making this work out and be okay for Scott.
I've had to go back to work, back home, back to "life", and it's been torture. Now that I am away, my mind is constantly focused on when I can get back to Scott's. Every time my phone rings, my heart drops. I feel obsessed to "see him one more time". I feel like I need to tell him goodbye and that I love him again. I don't think I will ever be satisfied with my "last goodbye"
When I was with Scott, it was okay to suddenly burst into tears--everyone there understood. It was okay to be sad. I didn't have to pretend to be any other emotion than what I was truly feeling at that moment. I can't do that now and sometimes I feel like I'm breaking inside and smiling outside. I hate that. I'm sad my brother is dying, I'm sad I can't be there with him every moment. I don't want to do anything else right now, or make plans for the weekend, let alone tomorrow night. Somehow, planning something "fun" makes me feel like I am taking something away from Scott. I can't explain it....I'm just........SAD. I think we are all validated to feel this way and "deserve" too. I don't feel one bit bad about it.
Melissa and I attempted to go black Friday shopping. We woke up early. We drove to Ogden. We went to the first store. I didn't have really anything that I truly wanted to buy. When it became a decent hour we called Mom for the report on Scott. We didn't feel much like shopping after that. Because we were asked to do so, we went to one other store to buy Scott a new white shirt.............
Even though I hated what this meant more than anything, in some small way it was nice to feel like I could "do something" for Scott.
The other day my in-laws were talking about our upcoming Family Christmas Party. For many years Scott was part of our party serving as Santa. I was always very proud of him. Last year at the family party we had a not so great "fill in". This year Eric (Melissa's husband) is going to be Santa for our party. As I was talking about this years party with my brother in law, I suddenly felt this grip around my chest and literally felt like I could not breathe. For the first time, I thought about the possibility of having a Christmas without Scott and that thought made me feel like I was drowning. I went home and looked at all the Santa (Scott) pictures from our past parties and sobbed and sobbed over our "used to be normal" life.
My Mom said the other day that "life is never going to be the same". I've written all these words, but she couldn't have said it better.
April
He is not eating or drinking much any more. He has a very difficult time swallowing most of the time. Hospice has asked us to not give him anything to eat or drink, due to his high risk of choking. Of course, if he asks, we do our best to help him get it down. He is having a very difficult time swallowing the medications he is given to help him be comfortable. The nurse commented yesterday that he is starting to show some signs of dehydration.
He continues to be very swollen and is swelling more on whatever side he is turned to or leaning towards.
He ran a fever the other night and was drenched in sweat, but that seems to have resolved now.
He is very jaundiced. The whites of his eyes are now completely yellow.
He did get up out of bed yesterday and shower. This completely exhausted him and he didn't get out of bed for the rest of the day.
He sleeps most of the time and when he wakes most of the time he recognizes people. However, for the first time ever, he did not recognize immediate family recently. Our cousin Tommy came to visit and Scott recognized him and called him "Tommy Tinker" which was the nickname Scott has always called Tommy. It made me smile when I heard that and feel sad at that same time.
Part of me wants Scott to be completely unaware of what is happening to him. I've asked my Mom many times throughout this if she thinks that Scott realizes or understands that he is dying. (Maybe my real question is does he accept this???) My Mom does not believe that Scott does really know that he is dying. Mom has said a few times that Scott is young and that the human body just naturally wants to live--to survive. This thought is incredibly hard, something I have struggled to process. I think her statement is true. I just really pray that Scott is truly comfortable and feels peaceful and there is not some inner turmoil. It seems so cruel. I know we have a loving God, but man, I just don't get this. I have to tell myself and believe that somehow God is making this work out and be okay for Scott.
I've had to go back to work, back home, back to "life", and it's been torture. Now that I am away, my mind is constantly focused on when I can get back to Scott's. Every time my phone rings, my heart drops. I feel obsessed to "see him one more time". I feel like I need to tell him goodbye and that I love him again. I don't think I will ever be satisfied with my "last goodbye"
When I was with Scott, it was okay to suddenly burst into tears--everyone there understood. It was okay to be sad. I didn't have to pretend to be any other emotion than what I was truly feeling at that moment. I can't do that now and sometimes I feel like I'm breaking inside and smiling outside. I hate that. I'm sad my brother is dying, I'm sad I can't be there with him every moment. I don't want to do anything else right now, or make plans for the weekend, let alone tomorrow night. Somehow, planning something "fun" makes me feel like I am taking something away from Scott. I can't explain it....I'm just........SAD. I think we are all validated to feel this way and "deserve" too. I don't feel one bit bad about it.
Melissa and I attempted to go black Friday shopping. We woke up early. We drove to Ogden. We went to the first store. I didn't have really anything that I truly wanted to buy. When it became a decent hour we called Mom for the report on Scott. We didn't feel much like shopping after that. Because we were asked to do so, we went to one other store to buy Scott a new white shirt.............
Even though I hated what this meant more than anything, in some small way it was nice to feel like I could "do something" for Scott.
The other day my in-laws were talking about our upcoming Family Christmas Party. For many years Scott was part of our party serving as Santa. I was always very proud of him. Last year at the family party we had a not so great "fill in". This year Eric (Melissa's husband) is going to be Santa for our party. As I was talking about this years party with my brother in law, I suddenly felt this grip around my chest and literally felt like I could not breathe. For the first time, I thought about the possibility of having a Christmas without Scott and that thought made me feel like I was drowning. I went home and looked at all the Santa (Scott) pictures from our past parties and sobbed and sobbed over our "used to be normal" life.
My Mom said the other day that "life is never going to be the same". I've written all these words, but she couldn't have said it better.
April
Sunday, November 25, 2012
Time
From what I am told, Scott is about the same today as yesterday.
For those who see him often, they have said that he is more jaundiced today, then they have ever seen before.
He is very weak and is essentially dependent on others to move him around. With help, he was able to get out of bed one time today. He expresses that he wants to get up, but then physically can not, and by the time the help is ready to assist him, he has fallen back asleep.
He sleeps most of the time, but when awake, he does recognize people and most of what he says is making sense today. He sometimes says a few things that do not, but we are happy he still recognizes us.
The Hospice nurse came by today and she was asked how much longer she felt Scott had left on earth. As we all know this is an impossible question to answer, as only He knows, but something we are all wondering. She replied that she "didn't think that he could live for more than two weeks" It doesn't change anything of course--we will continue to love Scott and keep him as comfortable as possible.
For many days he has been calling out names in his sleep. He usually calls for Janiece or for our Mom. Today, he called out the name "Joe" and also asked where "Grandma Great" was at. Great Grandpa Joseph "Joe" Nelson and Great Grandma Fosse Nelson are in Heaven and we feel he is surrounded with love from more then we have the ability to see.
From Russell M Nelson:
Death separates “the spirit and the body [which] are the soul of man.” (D&C 88:15.) That separation evokes pangs of sorrow and shock among those left behind. The hurt is real. Only its intensity varies. Some doors are heavier than others. The sense of tragedy may be related to age. Generally the younger the victim, the greater the grief. Yet even when the elderly or infirm have been afforded merciful relief, their loved ones are rarely ready to let go. The only length of life that seems to satisfy the longings of the human heart is life everlasting.
For those who see him often, they have said that he is more jaundiced today, then they have ever seen before.
He is very weak and is essentially dependent on others to move him around. With help, he was able to get out of bed one time today. He expresses that he wants to get up, but then physically can not, and by the time the help is ready to assist him, he has fallen back asleep.
He sleeps most of the time, but when awake, he does recognize people and most of what he says is making sense today. He sometimes says a few things that do not, but we are happy he still recognizes us.
The Hospice nurse came by today and she was asked how much longer she felt Scott had left on earth. As we all know this is an impossible question to answer, as only He knows, but something we are all wondering. She replied that she "didn't think that he could live for more than two weeks" It doesn't change anything of course--we will continue to love Scott and keep him as comfortable as possible.
For many days he has been calling out names in his sleep. He usually calls for Janiece or for our Mom. Today, he called out the name "Joe" and also asked where "Grandma Great" was at. Great Grandpa Joseph "Joe" Nelson and Great Grandma Fosse Nelson are in Heaven and we feel he is surrounded with love from more then we have the ability to see.
From Russell M Nelson:
Death separates “the spirit and the body [which] are the soul of man.” (D&C 88:15.) That separation evokes pangs of sorrow and shock among those left behind. The hurt is real. Only its intensity varies. Some doors are heavier than others. The sense of tragedy may be related to age. Generally the younger the victim, the greater the grief. Yet even when the elderly or infirm have been afforded merciful relief, their loved ones are rarely ready to let go. The only length of life that seems to satisfy the longings of the human heart is life everlasting.
Saturday, November 24, 2012
A letter to my Brother
See Below Post for an update with more information...but here a letter for my brother.
To my Dearest Brother,
I was only seven when you moved out and I have far too few memories growing up with you then I would like. But I am told that even though, you wanted desperately for this last baby--me--to be a "brother" you were enamoured by me and loved me to pieces.
I am told that I was a late walker and a late talker because you carried me everywhere. I never had to speak to get something I wanted, it was given to me because you anticipated my needs and wants.
I am told that you and I always shared a room and some of that I do remember. I am told that you would jump up to get me when I would fuss or cry, even during the night.
I remember our awesome red, white, and blue patriotic themed room. I can't imagine that as we both got older, that you very much enjoyed sharing a room with your baby sister, but I don't remember ever feeling that way.
I remember your water bed and oh how I loved that thing. I didn't know of a single other person in the whole wide world who had a water bed. I had my own bed of course, but I loved sleeping in the water bed, and more times then not you had a bed mate whether you wanted or not.
I remember being terribly afraid of the dark my entire childhood and even some older years (I'll admit it now :). I hated the nights when you stayed out late and I didn't hear you breathing across the room. I felt safe when you were there and scared when you were not. When you moved out, I had a room "to myself" but this privilege was truly wasted on me. I never stayed much in there after you left and started "inviting" myself to sleep in Carrie and Melissa's bedroom.
I remember your love of being on the farm and watching you ride off with Dad in the truck or tractor. I was a tiny bit jealous--not because I couldn't go, because I could if I wanted, but mostly because I didn't share that same love with you and didn't have that time that you did with Dad.
I remember going to our farm for a field trip in Kindergarten. Mom and Dad always let you skip school that day to, so you could help out. I remember feeling like my heart was going to burst with pride as we turned down the canal road to the farm and I could see you and Dad's shapes from the road. I remember you taking extra time to make sure my friends and I got that extra special "touch" on the field trip.
I remember singing "Goodness Gracious Great Balls of Fire" with you at the top of my lungs and making Mom crazy. Mom didn't care too much for the lyrics and didn't think it was very age appropriate for me, but oh how I loved singing it. It was one of your favorite songs and one of the first ones that I knew every.single.word of.
I remember when you were taking welding classes and made me my own set of monkey bars for my birthday present. I don't think I was old enough to appreciate the time and skill it took to do that then, but today I do and I'm sorry I don't think I thanked you enough. I can't believe you did that for me. They are in Mom's yard with a beautiful flowering vine now, and I'll always remember you every time I see them.
I remember when my goldfish died. I have always been very sensitive to animals and couldn't bear to see them hurt or die. I haven't eaten meat since age 8 because of this. Even though you were a farmer through and through and didn't share my sentiment, you took compassion on me when I was heartbroken over my goldfish. Your friend Darrin was at our house and even so, you took time to help me. You scooped my goldfish out put him in an empty toothpaste box, dug a hole in the backyard, and buried him. I asked your friend Darrin to say a prayer, which he did. You would probably remember this as one of your most embarrassing memories, but it holds a special place in my heart.
I remember hanging on your friends and girlfriend (I only remember Janiece!) wanting to be right in the middle of whatever you were doing. I would want to sit on their laps, hold their hands, and fulfill my "annoying little sister" duties to the fullest, which I believe I was quite successful at. I truly NEVER remember you scolding me or driving me away.
I remember your teasing fondly now--tickling me, chasing me, and yes, even tooting in my face. :)
I remember you always wore a pair of wranglers, some boots, a t-shirt, and a baseball cap.
I remember the awesome mullet hairstyle you sported for years. I can picture your black curls in the back perfectly in my mind right now and can't help but smile.
I remember standing proudly in your wedding line--the only one I've ever had the privilege of being included in, and thinking "this was the best day ever." I felt like a princess. And even though I was young, I remember feeling so proud of you, so happy for you.
I remember you as a newlywed living across the street from you. I was happy to still have you close by. I remember your old car, that looked like the car from ghost busters, and riding in the back seat as you drove over "big bumps"
I remember each of your children being born, and how amazing that was. Not many other kids my age were aunties and it was a special thing for me. I wanted to mother them and always be with them. I loved your babies and still do, like I love my own.
I have always loved you big brother and I always will. I think in many ways we are opposites. I know I haven't always done the things you wanted me to and the opposite of this is true. But what I know now, and wish I figured out earlier, was how much it DIDN'T and DOESN'T matter.
I wish I had more time with you and that I could write I remember you growing old. I wish that I would never have a family picture without you in it. I wish I had spoken more kindly and loved you more deeply all the days of your life. Forty one years has not been long enough and I don't know why God thinks that it has. I believe in God and His plan, but I think I will always wonder why it had to be this way. I can't imagine Him needing you more then we do here. I look forward to a sweet reunion with you dear Brother and wish the time for me could be as quick on earth as it will be for you.
Earthly life will not be the same without you, but for as long as I am living I will remember you. My children and their children, will always remember. There will always be a place in my heart full of you and death can not separate that.
I remember.
Love your baby sister,
April
To my Dearest Brother,
I was only seven when you moved out and I have far too few memories growing up with you then I would like. But I am told that even though, you wanted desperately for this last baby--me--to be a "brother" you were enamoured by me and loved me to pieces.
I am told that I was a late walker and a late talker because you carried me everywhere. I never had to speak to get something I wanted, it was given to me because you anticipated my needs and wants.
I am told that you and I always shared a room and some of that I do remember. I am told that you would jump up to get me when I would fuss or cry, even during the night.
I remember our awesome red, white, and blue patriotic themed room. I can't imagine that as we both got older, that you very much enjoyed sharing a room with your baby sister, but I don't remember ever feeling that way.
I remember your water bed and oh how I loved that thing. I didn't know of a single other person in the whole wide world who had a water bed. I had my own bed of course, but I loved sleeping in the water bed, and more times then not you had a bed mate whether you wanted or not.
I remember being terribly afraid of the dark my entire childhood and even some older years (I'll admit it now :). I hated the nights when you stayed out late and I didn't hear you breathing across the room. I felt safe when you were there and scared when you were not. When you moved out, I had a room "to myself" but this privilege was truly wasted on me. I never stayed much in there after you left and started "inviting" myself to sleep in Carrie and Melissa's bedroom.
I remember your love of being on the farm and watching you ride off with Dad in the truck or tractor. I was a tiny bit jealous--not because I couldn't go, because I could if I wanted, but mostly because I didn't share that same love with you and didn't have that time that you did with Dad.
I remember going to our farm for a field trip in Kindergarten. Mom and Dad always let you skip school that day to, so you could help out. I remember feeling like my heart was going to burst with pride as we turned down the canal road to the farm and I could see you and Dad's shapes from the road. I remember you taking extra time to make sure my friends and I got that extra special "touch" on the field trip.
I remember singing "Goodness Gracious Great Balls of Fire" with you at the top of my lungs and making Mom crazy. Mom didn't care too much for the lyrics and didn't think it was very age appropriate for me, but oh how I loved singing it. It was one of your favorite songs and one of the first ones that I knew every.single.word of.
I remember when you were taking welding classes and made me my own set of monkey bars for my birthday present. I don't think I was old enough to appreciate the time and skill it took to do that then, but today I do and I'm sorry I don't think I thanked you enough. I can't believe you did that for me. They are in Mom's yard with a beautiful flowering vine now, and I'll always remember you every time I see them.
I remember when my goldfish died. I have always been very sensitive to animals and couldn't bear to see them hurt or die. I haven't eaten meat since age 8 because of this. Even though you were a farmer through and through and didn't share my sentiment, you took compassion on me when I was heartbroken over my goldfish. Your friend Darrin was at our house and even so, you took time to help me. You scooped my goldfish out put him in an empty toothpaste box, dug a hole in the backyard, and buried him. I asked your friend Darrin to say a prayer, which he did. You would probably remember this as one of your most embarrassing memories, but it holds a special place in my heart.
I remember hanging on your friends and girlfriend (I only remember Janiece!) wanting to be right in the middle of whatever you were doing. I would want to sit on their laps, hold their hands, and fulfill my "annoying little sister" duties to the fullest, which I believe I was quite successful at. I truly NEVER remember you scolding me or driving me away.
I remember your teasing fondly now--tickling me, chasing me, and yes, even tooting in my face. :)
I remember you always wore a pair of wranglers, some boots, a t-shirt, and a baseball cap.
I remember the awesome mullet hairstyle you sported for years. I can picture your black curls in the back perfectly in my mind right now and can't help but smile.
I remember standing proudly in your wedding line--the only one I've ever had the privilege of being included in, and thinking "this was the best day ever." I felt like a princess. And even though I was young, I remember feeling so proud of you, so happy for you.
I remember you as a newlywed living across the street from you. I was happy to still have you close by. I remember your old car, that looked like the car from ghost busters, and riding in the back seat as you drove over "big bumps"
I remember each of your children being born, and how amazing that was. Not many other kids my age were aunties and it was a special thing for me. I wanted to mother them and always be with them. I loved your babies and still do, like I love my own.
I have always loved you big brother and I always will. I think in many ways we are opposites. I know I haven't always done the things you wanted me to and the opposite of this is true. But what I know now, and wish I figured out earlier, was how much it DIDN'T and DOESN'T matter.
I wish I had more time with you and that I could write I remember you growing old. I wish that I would never have a family picture without you in it. I wish I had spoken more kindly and loved you more deeply all the days of your life. Forty one years has not been long enough and I don't know why God thinks that it has. I believe in God and His plan, but I think I will always wonder why it had to be this way. I can't imagine Him needing you more then we do here. I look forward to a sweet reunion with you dear Brother and wish the time for me could be as quick on earth as it will be for you.
Earthly life will not be the same without you, but for as long as I am living I will remember you. My children and their children, will always remember. There will always be a place in my heart full of you and death can not separate that.
I remember.
Love your baby sister,
April
Life
I hate writing this. I hate that this is happening. I hate that life isn't fair. I HATE THIS!
I've mulled these words over and over in my head for 24 hours. Thinking about them seems less final then writing them. I've been asked to write them and so I will, with a heavy heart, a lump in my throat, and tears down my cheeks.
Scott is dying. His time on earth is nearing the end.
Scott has been rapidly declining over the past month. I would estimate that over the last few weeks he has spent as much time IN the hospital as he has out. It's been frustrating and hard for all of us, because it seems like treatments weren't helpful and options were running out. Now we know that they have.
Scott is not a candidate for a liver transplant and there is no other plan or treatment.
At his last visit in the hospital, about one week ago, difficult, heart wrenching discussions happened. The conclusion was to take Scott home and make him as comfortable as possible. We all feel like this is the best, and are trying to do this.
Hospice services were initiated last Sunday. I can't express our gratitude for the compassionate and above and beyond services they have given to Scott. Janiece comented today that over the last few days Scott has been more comfortable then he has been in months. I think this is true as well. Scott has suffered enough and we are grateful that we can lessen this suffering somewhat.
I know you are all probably wondering why Scott can't get a liver?
There are many reasons including his BMI is too high, he does not heal well, and he is very prone to infection. These obviously make him a very high risk patient and surgery would be very difficult. I personally don't think he would survive such an invasive and long surgery.
Scott is full to the brim of fluids. He has gained a lot of weight in the past few weeks--eating hardly anything, yet retaining fluids. His "water pills" aren't working. All day long he only urinates a few ounces despite the medications. His body isn't functioning the way it should. The fluids stay and the scale goes up. His skin is taut and hard. His pores are weeping fluid.
Scott has had pain everyday recently. Most of his pain is related to his amputed leg. He has a lot of muscle spasms in this leg and nerve related pain. This isn't going to get better with a liver transplant. Quality versus quantity?
Scott is weak and confused. He is in bed 22+ hours a day now. When the liver fails, it can cause an increase in ammonia levels in the body. Scott was taking a medication called lactulose that helped him rid his body of the excess ammonia by making him, basically have constant diarrhea. This medication was stopped about three days ago and the signs of a high ammonia level are more and more apparent today.
Our family has been gathered by Scott's bedside. Having "family sleepovers", good talks, and grieving together. Yesterday, we watched family videos and cried and laughed.
Death is inevitable for all of us. The only thing that is certain when we are born, is that eventually we will die. I'm not afraid of dying mostly because I believe that life doesn't end when we die, just...changes. However, I am afraid of being mortally seperated from my children. My heart aches for Scott because of this. My heart aches for his children growing up without their Dad. I think of all the things Scott will miss out on and I feel like I just can't bear that pain....and it's not even me.
Our Mom is crushed. It's not "natural" to outlive your children. My Mom is going straight to the top of the top in Heaven, I believe. I think I can say with confidence that this last year has been pretty terrible for her. She went from caring for her mother and being with her when she died to now caring for her son and watching him die. It's just not right. Her pain is evident and the pain is both emotional and physical. This literally hurts every fiber in your being.
Our Dad is dealing with this the way he always does--by serving others. He is staying busy and doing projects around Scott and Janiece's house, never going more than a few feet away. I know if he didn't keep his mind and hands busy that this would break him on the outside too instead of just the inside. I know it rips him apart to see his oldest son, only boy, dying. He slept on the floor last night just outside of Scott's room, not because there weren't any beds available but because he and all of us want to stay close.
Janiece, oh where do I start? This life she was thrust into has not been easy. She has lost so much yet continues to give. You don't ever imagine that this would happen to you, yet for her, it has. She has moved forward with faith and courage and been the rock that her children desperately need and no one else could fulfill. Being a caretaker is hard, and Scott has been hard to take care of. We LOVE you Janiece and will always be here for you now and forever!
Shaunie, Shelby, Shaylie, and Mick. My sweet nieces and nephews. How I grieve for your innocence and childhood that was taken to soon from you. You have endured things most adults will never face with a maturity that I can only believe God prepared you with. Your Dad will live on through all of you. I imagine the future filled with your babies being told of Grandpa Scott with fondness and tears in your eyes. I know if your Dad had a choice he would choose to stay on this earth to be with you. I truly wish that he could.
We can never take your Dad's place, but the Newman's will be here for you in thick and thin. I hope when you see us at all of life's important events your Dad's love with eminate through us. I pray for courage for you in the next few days. Be strong, remember this isn't the end. We will see Scott again and he will be whole--completely healed and happy. I believe he will always watch over you and be cheering you on from the sidelines in Heaven. He'll be there when you show your steers. He'll be there to see you graduate. He'll be there in a different way then we want, but I know he'll be there.
It's hard to die sometimes. We have no idea how many hours, days, or weeks Scott has left on Earth, but we are trying to make his last moments the best as possible. I truly pray that Scott's passing and therefore healing, can come swiftly and mercifully, I ask you dear loved ones to join me in this difficult prayer. He has suffered enough. We have suffered watching him. Pray for peace for him and for his family. I can't imagine this going on for very long, but only God knows, and we are trying our best to trust in His perfect timing.
1 John 5:13
"These things have I written unto you that believe on the name of the Son of God; that ye may KNOW that ye have ETERNAL LIFE and that ye may believe on the name of the Son of God.
I've mulled these words over and over in my head for 24 hours. Thinking about them seems less final then writing them. I've been asked to write them and so I will, with a heavy heart, a lump in my throat, and tears down my cheeks.
Scott is dying. His time on earth is nearing the end.
Scott has been rapidly declining over the past month. I would estimate that over the last few weeks he has spent as much time IN the hospital as he has out. It's been frustrating and hard for all of us, because it seems like treatments weren't helpful and options were running out. Now we know that they have.
Scott is not a candidate for a liver transplant and there is no other plan or treatment.
At his last visit in the hospital, about one week ago, difficult, heart wrenching discussions happened. The conclusion was to take Scott home and make him as comfortable as possible. We all feel like this is the best, and are trying to do this.
Hospice services were initiated last Sunday. I can't express our gratitude for the compassionate and above and beyond services they have given to Scott. Janiece comented today that over the last few days Scott has been more comfortable then he has been in months. I think this is true as well. Scott has suffered enough and we are grateful that we can lessen this suffering somewhat.
I know you are all probably wondering why Scott can't get a liver?
There are many reasons including his BMI is too high, he does not heal well, and he is very prone to infection. These obviously make him a very high risk patient and surgery would be very difficult. I personally don't think he would survive such an invasive and long surgery.
Scott is full to the brim of fluids. He has gained a lot of weight in the past few weeks--eating hardly anything, yet retaining fluids. His "water pills" aren't working. All day long he only urinates a few ounces despite the medications. His body isn't functioning the way it should. The fluids stay and the scale goes up. His skin is taut and hard. His pores are weeping fluid.
Scott has had pain everyday recently. Most of his pain is related to his amputed leg. He has a lot of muscle spasms in this leg and nerve related pain. This isn't going to get better with a liver transplant. Quality versus quantity?
Scott is weak and confused. He is in bed 22+ hours a day now. When the liver fails, it can cause an increase in ammonia levels in the body. Scott was taking a medication called lactulose that helped him rid his body of the excess ammonia by making him, basically have constant diarrhea. This medication was stopped about three days ago and the signs of a high ammonia level are more and more apparent today.
Our family has been gathered by Scott's bedside. Having "family sleepovers", good talks, and grieving together. Yesterday, we watched family videos and cried and laughed.
Death is inevitable for all of us. The only thing that is certain when we are born, is that eventually we will die. I'm not afraid of dying mostly because I believe that life doesn't end when we die, just...changes. However, I am afraid of being mortally seperated from my children. My heart aches for Scott because of this. My heart aches for his children growing up without their Dad. I think of all the things Scott will miss out on and I feel like I just can't bear that pain....and it's not even me.
Our Mom is crushed. It's not "natural" to outlive your children. My Mom is going straight to the top of the top in Heaven, I believe. I think I can say with confidence that this last year has been pretty terrible for her. She went from caring for her mother and being with her when she died to now caring for her son and watching him die. It's just not right. Her pain is evident and the pain is both emotional and physical. This literally hurts every fiber in your being.
Our Dad is dealing with this the way he always does--by serving others. He is staying busy and doing projects around Scott and Janiece's house, never going more than a few feet away. I know if he didn't keep his mind and hands busy that this would break him on the outside too instead of just the inside. I know it rips him apart to see his oldest son, only boy, dying. He slept on the floor last night just outside of Scott's room, not because there weren't any beds available but because he and all of us want to stay close.
Janiece, oh where do I start? This life she was thrust into has not been easy. She has lost so much yet continues to give. You don't ever imagine that this would happen to you, yet for her, it has. She has moved forward with faith and courage and been the rock that her children desperately need and no one else could fulfill. Being a caretaker is hard, and Scott has been hard to take care of. We LOVE you Janiece and will always be here for you now and forever!
Shaunie, Shelby, Shaylie, and Mick. My sweet nieces and nephews. How I grieve for your innocence and childhood that was taken to soon from you. You have endured things most adults will never face with a maturity that I can only believe God prepared you with. Your Dad will live on through all of you. I imagine the future filled with your babies being told of Grandpa Scott with fondness and tears in your eyes. I know if your Dad had a choice he would choose to stay on this earth to be with you. I truly wish that he could.
We can never take your Dad's place, but the Newman's will be here for you in thick and thin. I hope when you see us at all of life's important events your Dad's love with eminate through us. I pray for courage for you in the next few days. Be strong, remember this isn't the end. We will see Scott again and he will be whole--completely healed and happy. I believe he will always watch over you and be cheering you on from the sidelines in Heaven. He'll be there when you show your steers. He'll be there to see you graduate. He'll be there in a different way then we want, but I know he'll be there.
It's hard to die sometimes. We have no idea how many hours, days, or weeks Scott has left on Earth, but we are trying to make his last moments the best as possible. I truly pray that Scott's passing and therefore healing, can come swiftly and mercifully, I ask you dear loved ones to join me in this difficult prayer. He has suffered enough. We have suffered watching him. Pray for peace for him and for his family. I can't imagine this going on for very long, but only God knows, and we are trying our best to trust in His perfect timing.
1 John 5:13
"These things have I written unto you that believe on the name of the Son of God; that ye may KNOW that ye have ETERNAL LIFE and that ye may believe on the name of the Son of God.
Friday, November 23, 2012
Watching Scotty Grow
Watching Scotty Grow
There he sits with a pen and a yellow pad
What a handsome lad
That's my boy
BRLFQ spells mom and dad
But that ain't too bad
That's my boy
You can have your TV and you nightclubs
And you can have your drive in picture show
I'll stay here with my little man near
We'll listen to the radio
Biding my time and Watching Scotty grow
Making a castle out of building blocks
And a cardboard box
That's my boy
Mickey Mouse says it's thirteen o'clock
Well that's quite a shock!
That's my boy
In four short yearsI've gone from rags to riches
And what I did before that I don't know
So let it rain on my windowpane I got my own rainbow
And we're sitting here shiningWatching Scotty grow
Riding on daddy's shoulders off to bed
Old sleepy head
That's my boy
Got to have a drink of water and a story read
A teddy bear named Fred
That's my boy
What's that you say momma
Come on and keep you feet warm
Well save me a place
I'll be there in a minute or so I'll think I'll stay right here and
Say a little prayer before I go
Me and God Watching Scotty grow
Me and GodWatching Scotty grow...
Our hearts are breaking. The plan is keeping Scott as comfortable as possible. Only God knows the next chapter in Scott's story or the hows or when's. We are trusting Him and His perfect timing.
There he sits with a pen and a yellow pad
What a handsome lad
That's my boy
BRLFQ spells mom and dad
But that ain't too bad
That's my boy
You can have your TV and you nightclubs
And you can have your drive in picture show
I'll stay here with my little man near
We'll listen to the radio
Biding my time and Watching Scotty grow
Making a castle out of building blocks
And a cardboard box
That's my boy
Mickey Mouse says it's thirteen o'clock
Well that's quite a shock!
That's my boy
In four short yearsI've gone from rags to riches
And what I did before that I don't know
So let it rain on my windowpane I got my own rainbow
And we're sitting here shiningWatching Scotty grow
Riding on daddy's shoulders off to bed
Old sleepy head
That's my boy
Got to have a drink of water and a story read
A teddy bear named Fred
That's my boy
What's that you say momma
Come on and keep you feet warm
Well save me a place
I'll be there in a minute or so I'll think I'll stay right here and
Say a little prayer before I go
Me and God Watching Scotty grow
Me and GodWatching Scotty grow...
Our hearts are breaking. The plan is keeping Scott as comfortable as possible. Only God knows the next chapter in Scott's story or the hows or when's. We are trusting Him and His perfect timing.
Tuesday, September 18, 2012
Roller Coaster
I've been telling people who have asked me how Scott was doing that "this roller coaster ride is giving us whiplash"
On Saturday we were told to prepare for Scott's life to end.
Today, we are preparing for him to be discharged home.
It's unbelievable, and miraculous, and completely exhausting. We are so grateful.
Scott was told he has cellulitis (a skin infection) this is very treatable and nothing compared to the thoughts of necrotizing fasciitis.
He is improving and feeling so much better. The antibiotics are working and seem to be clearing up the infection.
Yesterday, he was transfered from the ICU to the 8th floor. All of his IV's were removed except for one.
He's had a few ups and downs with his lab work. His potassium has been a little low which has been quickly corrected. His WBC count is returning to a more normal level.
I'm afrad that this blog has become a very dramatic tale. My life is full, and as you've noticed I primarily update when things are not going well. For even me, typing the words that he is going home today, just again seems so unbelievable after the last post. But I promise I try very hard to write only things that are true and I always ask Janiece to read and let me know if I haven't got the details correct.
We're grateful that Scott is still here. I truly believe that for all of us, when our "time is up", it's up and only God knows this. Doctors can predict and speculate, but again, only God knows.
Thank you for your continued support, love, and prayers. We could not battle this war alone and would be lost without our faith, friends, and family.
Much Love,
April
On Saturday we were told to prepare for Scott's life to end.
Today, we are preparing for him to be discharged home.
It's unbelievable, and miraculous, and completely exhausting. We are so grateful.
Scott was told he has cellulitis (a skin infection) this is very treatable and nothing compared to the thoughts of necrotizing fasciitis.
He is improving and feeling so much better. The antibiotics are working and seem to be clearing up the infection.
Yesterday, he was transfered from the ICU to the 8th floor. All of his IV's were removed except for one.
He's had a few ups and downs with his lab work. His potassium has been a little low which has been quickly corrected. His WBC count is returning to a more normal level.
I'm afrad that this blog has become a very dramatic tale. My life is full, and as you've noticed I primarily update when things are not going well. For even me, typing the words that he is going home today, just again seems so unbelievable after the last post. But I promise I try very hard to write only things that are true and I always ask Janiece to read and let me know if I haven't got the details correct.
We're grateful that Scott is still here. I truly believe that for all of us, when our "time is up", it's up and only God knows this. Doctors can predict and speculate, but again, only God knows.
Thank you for your continued support, love, and prayers. We could not battle this war alone and would be lost without our faith, friends, and family.
Much Love,
April
Sunday, September 16, 2012
A Timeline
As most of you know, Scott was admitted to IMC last night. I'm sitting by his bedside right now. Here is a brief synopsis of what happened leading up to this and where we are now.
Friday the 14th, Scott woke up feeling okay. By mid morning he was nauseated and not feeling well. Scott was having a lot of pain in his stump and did not sleep well at all on Friday.
Saturday the 15th, Scott woke up feeling terrible. He was throwing up (everywhere...unfortunately) and the pain in his stump was unbearable. Scott, Janiece and Mick had noticed a red rash on his stump earlier and when they looked again it had significantly worsened and started to spread up Scott's upper thigh and into his buttocks. He had a small area on his low back as well.
Around noon, he was taken to the Tremonton Hospital. As always (Scott's veins are absolutely terrible), they had a difficult time getting IV access. He was given pain medication, which I am told did not seem to make much of an improvement. The decision was made to transport Scott by helicopter to IMC.
Arrangements could not be made for a helicopter transport and instead he was transferred by ambulance last night around 6:00.
He was admitted to the ICU and once again we were not given good news.
The doctor thought last night that Scott could likely have necrotizing fasciitis (a flesh eating infection, that caused him to have his leg amputed previously) again. We were shocked...the odds of getting this one time, are very rare, but a second time? It just didn't seem possible...and it was devastating.
When Scott had his leg amputated only below his knee looked infected. When they opened it up and the surgeon came out, he said that "these things, always look worse on the inside then they do on the outside" Scott ended up with an above the knee amputation.
Obviously because of how high up this infection looked on the outside, there really isn't a surgical intervention that could be done.
The doctor word for word told us last night, that if Scott did have necrotizing fasciitis he though his chances of surviving were slim. He said that he had seen this take someone's life in 6 hours, or in 24 hours. He told Janiece to get the family here. He asked Janiece what type of life saving measures she wanted in place for Scott. I pray none of you, are ever faced with this.
We were not given much hope last night.
The ICU room was full of those who love Scott. We cried, we prayed, and we sat by Scott. Scott was confused and in a lot of pain. It was a terrible night, while we waited....waited for what???
In the past when Scott has had an infection, his WBC (white blood cell count) was always normal. When he had his leg amputated and obviously was FULL of infection, his WBC was fairly normal. I have heard the physicians say that Scott has some type of autoimmune problem as well (whether this is related to his liver problem or not, I don't know).
When he was admitted last night, he WBC was 19.5, which is very elevated. I was scared because in my mind, I felt like if his body actually amounted an immune response this time, that things must be very bad.
Scott had a central line (essentially an IV, in his neck) placed last night and after he was stable enough, he had a CT scan done. This was hopefully going to tell us how "deep" the infection was in his body.
Scott had the CT scan done around midnight. Around 1:00am the physician talked to Janiece and had good news--the infection appeared to be superficial (skin) and did not appear to be infecting the inside deep tissues or bones. We are grateful for the good news, but Scott still has an uphill battle to fight.
Scott was confused last night and in order to get all of his IV lines and everything placed, he required being tied to the bed. I can't put my emotions into words, but this, broke my heart.
Last night was terrible for everyone, but little 11 year old Mick, was especially distraught. In the waiting room, he hugged his Mom and they were both crying and talking quietly. I was sitting across from them, and I just couldn't get over the injustice of this all. Why does Mick have to go through this? I can only pray that somehow at sometime, look back at this time, and have some understanding.
Scott's cultures have not come back yet (blood samples that show what bacteria is infecting Scott) and this can take a few days. In the meantime they are treating Scott "with the big gun antibiotics, and many of them". He is on at least three, that I know of. At this point, the infection is the priority and they are treating him without much regard of his liver or kidneys at this point (I do not say this negatively, this is the way it should be, again the infection is the priority, and after this road block, if treatment/corrections are needed for kidney function etc, they will start on that)
This morning, Scott was still a little confused, agitated, and painful. Things this afternoon have improved. HIs rash has not worsened and some even think it has slightly improved (it looks the same to me). He has hardly slept though, and we are all worried about that. We do not want a reoccurence of the medical delirium that Scott had over a year ago (when a person gets extremely confused/agitated due to lack of sleep, medications etc)
At this point primarily due to the fact that he is improving, everyone is feeling less suspicious of necrotizing fasciitis.
A question, that I have and I think everyone has is...what next? Where do we go from here? Can Scott still be a candidate for a liver transplant. No one has talked to us about this and none of us have asked. Maybe the answer, might hurt too much.
Now for the personal side...
Scott called me last Wednesday. I was at work. I was busy. I was running behind and I had patient's waiting to see me. I just happened to be at my desk when my phone started ringing and I saw it was Scott's number. I picked up and the first words out of my mouth were "Hi Scott, I have about 20 seconds to talk" He quickly told me his news, and I quickly hung up. Last night, when we were told, Scott would likely not make it. All I could think about and feel was my overwhelming guilt about what I thought was our last conversation. How I didn't take the time, to listen to him, to ask him how he was doing. I'm not even sure I ended the call by telling him I loved him.
Initially, as lines were being placed etc, they were not allowing family in to see Scott. Again, he was confused and not engaging in conversation or recognizing everyone. I was full of prayer that I might talk to him one last time, and that he would recognize me, and I could somehow right my last wrong.
At last, when we were allowed in the room, I went in his room and said "Hi Scott" he peeked over at me and said "Hi April" It was one of those moments, that I won't forget, like I was being given a second chance. I guess my point is, that you never know when the end is for anyone, and to treat every moment sacredly. I got a glimpse of the guilt last night from not doing so, and I really think it could consume a person.
One more..
Another family was in the waiting room. They BYU vs U of U game was on the TV. I know football is a big thing for people...but for me it just never has been. This family, particularly one male, was quite enthusiastic over the plays in the game. He would holler out "fumble!" or whatever, every few seconds. And I literally wanted to slap the guy and give him a lecture about how inconsiderate he was, how disrespectful he was. Didn't he see us weeping over there? Couldn't he sense our suffering? And couldn't he BE QUIET and turn that stupid football game off!
Today, we were talking about hospital shifts here with Scott. Tomorrow responsibilities return and we have work, we have school, and time keeps progressing.
Whenever we have had moments like this with Scott (unfortunately this is not the first) I've always felt like the world should stop turning, just for a minute. That the football game should stop, that work responsibilites should go away, and that the only thing any of us had to focus on was being here, loving Scott, and dealing with our grief. I feel that I need to wear a shirt that says "My brother is dying, tread lightly with me, speak kindly to me" I know it's unreasonable, and I know the world can't stop, but sometimes I really wish it could.
Friday the 14th, Scott woke up feeling okay. By mid morning he was nauseated and not feeling well. Scott was having a lot of pain in his stump and did not sleep well at all on Friday.
Saturday the 15th, Scott woke up feeling terrible. He was throwing up (everywhere...unfortunately) and the pain in his stump was unbearable. Scott, Janiece and Mick had noticed a red rash on his stump earlier and when they looked again it had significantly worsened and started to spread up Scott's upper thigh and into his buttocks. He had a small area on his low back as well.
Around noon, he was taken to the Tremonton Hospital. As always (Scott's veins are absolutely terrible), they had a difficult time getting IV access. He was given pain medication, which I am told did not seem to make much of an improvement. The decision was made to transport Scott by helicopter to IMC.
Arrangements could not be made for a helicopter transport and instead he was transferred by ambulance last night around 6:00.
He was admitted to the ICU and once again we were not given good news.
The doctor thought last night that Scott could likely have necrotizing fasciitis (a flesh eating infection, that caused him to have his leg amputed previously) again. We were shocked...the odds of getting this one time, are very rare, but a second time? It just didn't seem possible...and it was devastating.
When Scott had his leg amputated only below his knee looked infected. When they opened it up and the surgeon came out, he said that "these things, always look worse on the inside then they do on the outside" Scott ended up with an above the knee amputation.
Obviously because of how high up this infection looked on the outside, there really isn't a surgical intervention that could be done.
The doctor word for word told us last night, that if Scott did have necrotizing fasciitis he though his chances of surviving were slim. He said that he had seen this take someone's life in 6 hours, or in 24 hours. He told Janiece to get the family here. He asked Janiece what type of life saving measures she wanted in place for Scott. I pray none of you, are ever faced with this.
We were not given much hope last night.
The ICU room was full of those who love Scott. We cried, we prayed, and we sat by Scott. Scott was confused and in a lot of pain. It was a terrible night, while we waited....waited for what???
In the past when Scott has had an infection, his WBC (white blood cell count) was always normal. When he had his leg amputated and obviously was FULL of infection, his WBC was fairly normal. I have heard the physicians say that Scott has some type of autoimmune problem as well (whether this is related to his liver problem or not, I don't know).
When he was admitted last night, he WBC was 19.5, which is very elevated. I was scared because in my mind, I felt like if his body actually amounted an immune response this time, that things must be very bad.
Scott had a central line (essentially an IV, in his neck) placed last night and after he was stable enough, he had a CT scan done. This was hopefully going to tell us how "deep" the infection was in his body.
Scott had the CT scan done around midnight. Around 1:00am the physician talked to Janiece and had good news--the infection appeared to be superficial (skin) and did not appear to be infecting the inside deep tissues or bones. We are grateful for the good news, but Scott still has an uphill battle to fight.
Scott was confused last night and in order to get all of his IV lines and everything placed, he required being tied to the bed. I can't put my emotions into words, but this, broke my heart.
Last night was terrible for everyone, but little 11 year old Mick, was especially distraught. In the waiting room, he hugged his Mom and they were both crying and talking quietly. I was sitting across from them, and I just couldn't get over the injustice of this all. Why does Mick have to go through this? I can only pray that somehow at sometime, look back at this time, and have some understanding.
Scott's cultures have not come back yet (blood samples that show what bacteria is infecting Scott) and this can take a few days. In the meantime they are treating Scott "with the big gun antibiotics, and many of them". He is on at least three, that I know of. At this point, the infection is the priority and they are treating him without much regard of his liver or kidneys at this point (I do not say this negatively, this is the way it should be, again the infection is the priority, and after this road block, if treatment/corrections are needed for kidney function etc, they will start on that)
This morning, Scott was still a little confused, agitated, and painful. Things this afternoon have improved. HIs rash has not worsened and some even think it has slightly improved (it looks the same to me). He has hardly slept though, and we are all worried about that. We do not want a reoccurence of the medical delirium that Scott had over a year ago (when a person gets extremely confused/agitated due to lack of sleep, medications etc)
At this point primarily due to the fact that he is improving, everyone is feeling less suspicious of necrotizing fasciitis.
A question, that I have and I think everyone has is...what next? Where do we go from here? Can Scott still be a candidate for a liver transplant. No one has talked to us about this and none of us have asked. Maybe the answer, might hurt too much.
Now for the personal side...
Scott called me last Wednesday. I was at work. I was busy. I was running behind and I had patient's waiting to see me. I just happened to be at my desk when my phone started ringing and I saw it was Scott's number. I picked up and the first words out of my mouth were "Hi Scott, I have about 20 seconds to talk" He quickly told me his news, and I quickly hung up. Last night, when we were told, Scott would likely not make it. All I could think about and feel was my overwhelming guilt about what I thought was our last conversation. How I didn't take the time, to listen to him, to ask him how he was doing. I'm not even sure I ended the call by telling him I loved him.
Initially, as lines were being placed etc, they were not allowing family in to see Scott. Again, he was confused and not engaging in conversation or recognizing everyone. I was full of prayer that I might talk to him one last time, and that he would recognize me, and I could somehow right my last wrong.
At last, when we were allowed in the room, I went in his room and said "Hi Scott" he peeked over at me and said "Hi April" It was one of those moments, that I won't forget, like I was being given a second chance. I guess my point is, that you never know when the end is for anyone, and to treat every moment sacredly. I got a glimpse of the guilt last night from not doing so, and I really think it could consume a person.
One more..
Another family was in the waiting room. They BYU vs U of U game was on the TV. I know football is a big thing for people...but for me it just never has been. This family, particularly one male, was quite enthusiastic over the plays in the game. He would holler out "fumble!" or whatever, every few seconds. And I literally wanted to slap the guy and give him a lecture about how inconsiderate he was, how disrespectful he was. Didn't he see us weeping over there? Couldn't he sense our suffering? And couldn't he BE QUIET and turn that stupid football game off!
Today, we were talking about hospital shifts here with Scott. Tomorrow responsibilities return and we have work, we have school, and time keeps progressing.
Whenever we have had moments like this with Scott (unfortunately this is not the first) I've always felt like the world should stop turning, just for a minute. That the football game should stop, that work responsibilites should go away, and that the only thing any of us had to focus on was being here, loving Scott, and dealing with our grief. I feel that I need to wear a shirt that says "My brother is dying, tread lightly with me, speak kindly to me" I know it's unreasonable, and I know the world can't stop, but sometimes I really wish it could.
Monday, July 30, 2012
Brenn HIll Benefit
Scott Newman
Benefit Concert, Tri Tip Dinner and Auction
Featuring Brenn Hill
Thursday August 2, 2012, 7:30 pm
At the Old Barn Theater
Tickets $30 each, 4 for $75, or 6 for $100
To purchase tickets or drop off auction items contact Shuanie Newman Mackey 307-200-1854 or Carolyn Skinner 801-430-4391
Or you pick up at Greenline Equipment or Calls Country Nursery
Thank you for your love and support!
Benefit Concert, Tri Tip Dinner and Auction
Featuring Brenn Hill
Thursday August 2, 2012, 7:30 pm
At the Old Barn Theater
Tickets $30 each, 4 for $75, or 6 for $100
To purchase tickets or drop off auction items contact Shuanie Newman Mackey 307-200-1854 or Carolyn Skinner 801-430-4391
Or you pick up at Greenline Equipment or Calls Country Nursery
Thank you for your love and support!
Thursday, June 28, 2012
Our Lazarus Moment
I can't believe the difference three days have made. Scott is soooo much better then when he was admitted on Monday. I have to admit, that on Monday and Tuesday I truly thought that our time with Scott was extremely limited. It's amazing the difference four units of blood and restoring his electrolytes to a more normal level has made for Scott. He is a different person than he was on Monday. I feel we witnessed a "Lazarus Moment"
The kidney specialist has been amazed at the progress Scott's kidneys have made over the last two days. His levels are slowly returning to a "normal" level for him. He wants to keep an eye on him for the next few days and not bring them back up to "normal" too fast. Bringing them up too fast can also be hard for Scott's body to adjust to. Slow and steady...
A comparison:
Sodium: (normal is 135-145, normal for Scott would be above 120)
Monday 107
Today 121
Potassium: (normal is 3.5-5.0)
Monday 6.2
Today 4.4
Kidney function labs
Creatinine
Monday 4.08 (way too high)
Today 1.31 (still high, but getting closer to normal)
Scott is feeling better, is awake more, is rarely confused now, has more energy, is transfering in and out of bed now with little assist, and it is truly, truly miraculous.
As I mentioned early, on Tuesday Scott has some redness and warmth to his stump. That evening he had a low grade fever. IV antibiotics were started and since that time his leg has improved and he has not had a fever however they are concerned about a possible infection. A CT scan was completed today on his stump and Scott had a fairly large collection of fluid. This could be an infection, which is not what we want. For now, they are watching and continuing the antibiotics. He may requre his stump to be "opened up" for further evaluation. I'm really hoping Scott can avoid this.
If Scott does have an infection and as long as he is on antibiotics (any antibiotics for any reason, for that matter) he has to be put on "hold" for a liver transplant. He is not removed from the list, per say, but he would not be eligible for a liver during that time, even if a possible liver became available. In the past, Scott has had a very difficult time recovering from infections and has sometimes been on antibiotics for an extended period of time. That's time we would rather have spent as an eligible candidate for a liver. Please pray that Scott's leg can improve and that there is no infection.
A little more about Scott's liver. Starting two years ago when Scott was initially told he needed a liver transplant they began to monitor his MELD score (Model for end stage liver disease). This is a calculation of lab values (bilirubin levels, creatinine (kidney function), and INR (blood clotting level) that give us an idea how "sick" Scott's liver is. The MELD score can influence when and where on the transplant list patients are listed at.
Two years ago, Scott's MELD score was usually around 17-19. Certainly a sick liver, but not "sick enough" to be listed for a transplant. (in the transplant world, you have to be pretty darn sick, to be listed). We were told at our first consult with the transplant team that most patient are listed when their MELD score is around 25. On Monday when Scott was admitted, his MELD score was 32. A score of 32 indicated he needed a liver quickly and would have been towards the "top" of the transplant list.
As his lab levels have returned to a more normal level over the past two days, his MELD score has improved. His MELD score today is 25. A score of 25 would put Scott in the "middle" of the transplant list.
I speak loosely about the "top, "middle" etc of the transplant list because it's not clear cut like that. It doesn't matter if Scott is technically at the "top" of the list (he would need to be very sick for this to happen, like on Monday), he still has to have a donor that is a good "match" for him. Donor livers may be available, but if they do not seem to be a good match for Scott (size, blood type etc) then they would obviously go to the next candidate who was a match, regardless of Scott being at the top.
Obviously as Scott's MELD score changes--which it WILL (improves, worsens). This will also change where he sits on the list. Estimated time for patients at the "top of the list" for liver transplant is 6-12 weeks. If your sitting in the middle it could take up to one year. But we've been told that, Scott will and essentially it seems like he "has to" get worse, before he can have a good chance of getting a liver transplant.
The transplant physician said yesterday that out of all the patients that need a liver, roughly 3 out of 10 actually get to be listed for a transplant (again it's not easy to "make the list" in the first place and so many factors go into establishing if a patient is a candidate for liver transplant or not. Scott has two things going for him to be listed--his young age and the fact that his liver failure was due to a genetic disease (Alpha One Anti Trypsin Deficiency) and not self inflicted (drinking, etc).
Out of those three patients that are listed on the transplant list 1 out of 3 will receive a liver. Last year IMC did 27 liver transplants.
So as you can see, the road is going to be long and bumpy and it's not easy at all to "just get Scott a new liver" like we all want. People are living longer and things that used to cause fatal injuries just don't as much anymore--like the transplant case worker said. Car accidents that used to be fatal, people are now surviving. Cars are safer, people are more aware with seat belts, medicine and the life saving capabilities have greatly improved. All of these are absolutely amazing, wonderful, improvements for all of us, but in the donor world it means less donors while the amount of patients needing a liver doesn't decline at all.
I feel a litte crass talking about this like that because it truly breaks my heart to think about it in depth. Someone will die, to save my brother. I absolutely want my brother to live and there is no other way he can at this point without a liver transplant. It's a hard thing to pray for-- that Scott will get a liver because it means someone else's life will end and some other family will be devastated. That grief and sadness and loss of TIME we are so desperately trying to avoid, is what will happen to another family. I have prayed that there is some family out there that will consider organ donation and that my brother could be the recipient. Then I feel awful about it. Again, it's bittersweet.
Part of me likes to think about Scott and his donor having a relationship before this earth. That they knew each other, had this connection, and this person knew he would give the ultimate gift to my brother. It's a nice thought.
Jesus looked at them and said, "With man this is impossible, but with God all things are possible" Matthew 19:26
The kidney specialist has been amazed at the progress Scott's kidneys have made over the last two days. His levels are slowly returning to a "normal" level for him. He wants to keep an eye on him for the next few days and not bring them back up to "normal" too fast. Bringing them up too fast can also be hard for Scott's body to adjust to. Slow and steady...
A comparison:
Sodium: (normal is 135-145, normal for Scott would be above 120)
Monday 107
Today 121
Potassium: (normal is 3.5-5.0)
Monday 6.2
Today 4.4
Kidney function labs
Creatinine
Monday 4.08 (way too high)
Today 1.31 (still high, but getting closer to normal)
Scott is feeling better, is awake more, is rarely confused now, has more energy, is transfering in and out of bed now with little assist, and it is truly, truly miraculous.
As I mentioned early, on Tuesday Scott has some redness and warmth to his stump. That evening he had a low grade fever. IV antibiotics were started and since that time his leg has improved and he has not had a fever however they are concerned about a possible infection. A CT scan was completed today on his stump and Scott had a fairly large collection of fluid. This could be an infection, which is not what we want. For now, they are watching and continuing the antibiotics. He may requre his stump to be "opened up" for further evaluation. I'm really hoping Scott can avoid this.
If Scott does have an infection and as long as he is on antibiotics (any antibiotics for any reason, for that matter) he has to be put on "hold" for a liver transplant. He is not removed from the list, per say, but he would not be eligible for a liver during that time, even if a possible liver became available. In the past, Scott has had a very difficult time recovering from infections and has sometimes been on antibiotics for an extended period of time. That's time we would rather have spent as an eligible candidate for a liver. Please pray that Scott's leg can improve and that there is no infection.
A little more about Scott's liver. Starting two years ago when Scott was initially told he needed a liver transplant they began to monitor his MELD score (Model for end stage liver disease). This is a calculation of lab values (bilirubin levels, creatinine (kidney function), and INR (blood clotting level) that give us an idea how "sick" Scott's liver is. The MELD score can influence when and where on the transplant list patients are listed at.
Two years ago, Scott's MELD score was usually around 17-19. Certainly a sick liver, but not "sick enough" to be listed for a transplant. (in the transplant world, you have to be pretty darn sick, to be listed). We were told at our first consult with the transplant team that most patient are listed when their MELD score is around 25. On Monday when Scott was admitted, his MELD score was 32. A score of 32 indicated he needed a liver quickly and would have been towards the "top" of the transplant list.
As his lab levels have returned to a more normal level over the past two days, his MELD score has improved. His MELD score today is 25. A score of 25 would put Scott in the "middle" of the transplant list.
I speak loosely about the "top, "middle" etc of the transplant list because it's not clear cut like that. It doesn't matter if Scott is technically at the "top" of the list (he would need to be very sick for this to happen, like on Monday), he still has to have a donor that is a good "match" for him. Donor livers may be available, but if they do not seem to be a good match for Scott (size, blood type etc) then they would obviously go to the next candidate who was a match, regardless of Scott being at the top.
Obviously as Scott's MELD score changes--which it WILL (improves, worsens). This will also change where he sits on the list. Estimated time for patients at the "top of the list" for liver transplant is 6-12 weeks. If your sitting in the middle it could take up to one year. But we've been told that, Scott will and essentially it seems like he "has to" get worse, before he can have a good chance of getting a liver transplant.
The transplant physician said yesterday that out of all the patients that need a liver, roughly 3 out of 10 actually get to be listed for a transplant (again it's not easy to "make the list" in the first place and so many factors go into establishing if a patient is a candidate for liver transplant or not. Scott has two things going for him to be listed--his young age and the fact that his liver failure was due to a genetic disease (Alpha One Anti Trypsin Deficiency) and not self inflicted (drinking, etc).
Out of those three patients that are listed on the transplant list 1 out of 3 will receive a liver. Last year IMC did 27 liver transplants.
So as you can see, the road is going to be long and bumpy and it's not easy at all to "just get Scott a new liver" like we all want. People are living longer and things that used to cause fatal injuries just don't as much anymore--like the transplant case worker said. Car accidents that used to be fatal, people are now surviving. Cars are safer, people are more aware with seat belts, medicine and the life saving capabilities have greatly improved. All of these are absolutely amazing, wonderful, improvements for all of us, but in the donor world it means less donors while the amount of patients needing a liver doesn't decline at all.
I feel a litte crass talking about this like that because it truly breaks my heart to think about it in depth. Someone will die, to save my brother. I absolutely want my brother to live and there is no other way he can at this point without a liver transplant. It's a hard thing to pray for-- that Scott will get a liver because it means someone else's life will end and some other family will be devastated. That grief and sadness and loss of TIME we are so desperately trying to avoid, is what will happen to another family. I have prayed that there is some family out there that will consider organ donation and that my brother could be the recipient. Then I feel awful about it. Again, it's bittersweet.
Part of me likes to think about Scott and his donor having a relationship before this earth. That they knew each other, had this connection, and this person knew he would give the ultimate gift to my brother. It's a nice thought.
Jesus looked at them and said, "With man this is impossible, but with God all things are possible" Matthew 19:26
Wednesday, June 27, 2012
TIME
Recently my husband and I celebrated our 13th wedding anniversary by attending the Temple. There we participated in the sealing ordinance. Our temple worker encouraged us to ask questions and truly wanted us to learn. A question was asked why the ordinances for the deceased say both TIME and eternity? Shouldn't it just be eternity?
As we discussed this, I thought to my self "Oh, geez the pressures of time follow us--everywhere. Even there"
You see, much of that night, had already been dictated by time. I couldn't believe it had been 13 years. My husband and I were babies when we were married and I'm only a few years shy of the mark of spending more TIME with my husband then we have apart. Where has that TIME gone?
That night, my husband arrived home late from work. He had gotten busy at the last minute and TIME had gotten away from him. We rushed to the restaurant and became frustrated with the traffic----it was wasting our TIME.
We dined at "The Roof" An absolutely beautiful building that overlooks the Salt Lake Valley. On our way to our seat, we passed a live pianist playing music for our enjoyment. And you know what? I was so worried about our lost TIME, that I can't really remember taking the TIME to enjoy what I was surrounded by.
We rushed to the temple, hopeful that we could make it to the last ordinance that started at 8pm. We certainly didn't think we would have enough TIME to make it. Luckily, we did, and after an hour or so, our ordinance worker asked us all if we had TIME to finish the few names we had left. Of course, I wanted to stay, but I was also worried about the TIME-how long we had been gone from our children, how late it was getting. Time, time, time.
Just like all of you, my life feels full and busy and always, like I never have quite enough TIME.
I've spent a lot of years in school, which took a lot of TIME to complete and a lot of my TIME everyday while I was doing it. My family got less and less of me as my comittments took up the majority of my TIME. I always did it with the intent that "when I was done, I would have more time", "the job, I would be able to get, would allow me more flexible hours, more TIME", "the hours I would be required to work, would be better time wise for my children" I'm forever grateful that I did it, and our lives our better because of the sacrifice of TIME, I made. But you know what? Life feels just as busy, just as full, and TIME continues to allude me.
Tonight, I came home from the hospital and didn't feel like I had enough TIME to help out with my son's scout activity tonight. I ended up going and it went 30 minutes over the usual TIME and I was annoyed by that. I came home feeling rushed again and when my daughter asked if I could read her three books instead of two, I felt like I didn't have enough TIME and that it was too far past her bedTIME.
As Scott lays in the hospital, so many of our questions have and continue to revolve around TIME.
When will Scott be listed for a liver?
When will Scott be able to actually get a liver?
How long can Scott's current liver continue to give him life?
How long will he be in the hospital this time?
How long will he stay in the hospital after a transplant?
How long will his kidneys continue to function?
What is his life expectancy post liver transplant?
How long? How much time? When?
The problem?
No one knows-----answers vary, statistics can only estimate, and only TIME will tell.
It's a tricky balance of TIME--Scott has to be very sick to be on the top of the liver transplant list, but no one knows if the perfect match for him will be available during that same TIME. We can't control the timing. We desperately want a whole lot of QUALITY and QUANTITY of TIME with Scott but it seems like, while we wait, we can't have both.
I spent a lot of TIME with Scott since Monday and particularly today we spent TIME discussing things, you never want to discuss. Making tough decisions and talking about a possible TIME we hope doesn't happen for years and years. Maybe it's my background, but it was very important to me to do this and I made a goal early today that "Today was the DAY. This was the TIME. There was never going to be a better TIME" We did it and I feel good about it and so very sad about it.
After all, we're only asking for more TIME.
My life revolves around TIME, or more truthfully the perception I have that there never is enough TIME. In reality though, I'd be painfully ashamed to see the hours and hours I've spent wasting TIME. But after a day like today, and a night filled with troubled thoughts, I can't imagine a day again where I don't have TIME to read my baby three books instead of two or to attend scouts with my boy. I never want to take this TIME, I have for granted.
After all, none of us know, when our TIME on earth will end.
As we discussed this, I thought to my self "Oh, geez the pressures of time follow us--everywhere. Even there"
You see, much of that night, had already been dictated by time. I couldn't believe it had been 13 years. My husband and I were babies when we were married and I'm only a few years shy of the mark of spending more TIME with my husband then we have apart. Where has that TIME gone?
That night, my husband arrived home late from work. He had gotten busy at the last minute and TIME had gotten away from him. We rushed to the restaurant and became frustrated with the traffic----it was wasting our TIME.
We dined at "The Roof" An absolutely beautiful building that overlooks the Salt Lake Valley. On our way to our seat, we passed a live pianist playing music for our enjoyment. And you know what? I was so worried about our lost TIME, that I can't really remember taking the TIME to enjoy what I was surrounded by.
We rushed to the temple, hopeful that we could make it to the last ordinance that started at 8pm. We certainly didn't think we would have enough TIME to make it. Luckily, we did, and after an hour or so, our ordinance worker asked us all if we had TIME to finish the few names we had left. Of course, I wanted to stay, but I was also worried about the TIME-how long we had been gone from our children, how late it was getting. Time, time, time.
Just like all of you, my life feels full and busy and always, like I never have quite enough TIME.
I've spent a lot of years in school, which took a lot of TIME to complete and a lot of my TIME everyday while I was doing it. My family got less and less of me as my comittments took up the majority of my TIME. I always did it with the intent that "when I was done, I would have more time", "the job, I would be able to get, would allow me more flexible hours, more TIME", "the hours I would be required to work, would be better time wise for my children" I'm forever grateful that I did it, and our lives our better because of the sacrifice of TIME, I made. But you know what? Life feels just as busy, just as full, and TIME continues to allude me.
Tonight, I came home from the hospital and didn't feel like I had enough TIME to help out with my son's scout activity tonight. I ended up going and it went 30 minutes over the usual TIME and I was annoyed by that. I came home feeling rushed again and when my daughter asked if I could read her three books instead of two, I felt like I didn't have enough TIME and that it was too far past her bedTIME.
As Scott lays in the hospital, so many of our questions have and continue to revolve around TIME.
When will Scott be listed for a liver?
When will Scott be able to actually get a liver?
How long can Scott's current liver continue to give him life?
How long will he be in the hospital this time?
How long will he stay in the hospital after a transplant?
How long will his kidneys continue to function?
What is his life expectancy post liver transplant?
How long? How much time? When?
The problem?
No one knows-----answers vary, statistics can only estimate, and only TIME will tell.
It's a tricky balance of TIME--Scott has to be very sick to be on the top of the liver transplant list, but no one knows if the perfect match for him will be available during that same TIME. We can't control the timing. We desperately want a whole lot of QUALITY and QUANTITY of TIME with Scott but it seems like, while we wait, we can't have both.
I spent a lot of TIME with Scott since Monday and particularly today we spent TIME discussing things, you never want to discuss. Making tough decisions and talking about a possible TIME we hope doesn't happen for years and years. Maybe it's my background, but it was very important to me to do this and I made a goal early today that "Today was the DAY. This was the TIME. There was never going to be a better TIME" We did it and I feel good about it and so very sad about it.
After all, we're only asking for more TIME.
My life revolves around TIME, or more truthfully the perception I have that there never is enough TIME. In reality though, I'd be painfully ashamed to see the hours and hours I've spent wasting TIME. But after a day like today, and a night filled with troubled thoughts, I can't imagine a day again where I don't have TIME to read my baby three books instead of two or to attend scouts with my boy. I never want to take this TIME, I have for granted.
After all, none of us know, when our TIME on earth will end.
Tuesday, June 26, 2012
Hope not lost!
Today was a big day, with a lot of information to take in.
Where to begin?
Scott received two units of blood today. This blood has literally seeped life into Scott. He had more energy. He was awake. He was less confused. He got out of bed and helped transfer himself. It has been AMAZING to have more of the Scott we know and love today.
Dr. A the transplant surgeon came and spoke to us today she had good news and bad news.
A summary--
Again, we heard that Scott would be a high risk patient for a liver transplant. One risk factor is Scott's size. Dr. A stated that she has done transplants on patients larger than Scott and obviously patient's smaller than Scott. She stated that Scott's abdomen is full of fluids (ascites--a common condition with patient's who have liver problems). Because of the fluid build up, she felt like there was not going to be a lot of room for her to transplant a "large" liver and that he would likely require a small liver (opposite of what, you would think). She said that this fluid, will not be easy to get rid of because his tissues etc act as a sponge and you can't just "drain it out" easily.
We didn't ask what this would mean for Scott in the long run or if it makes any difference, to have a "small liver" versus a "big liver" in a big body.
However, Dr. A stated that she thought SCOTT COULD BE LISTED FOR A LIVER TRANSPLANT!!! She is going to talk to the other physicians and Scott may be on the transplant list "at the top" within the next week. Of course, we have no idea when a liver could be available for Scott, but Dr. A stated that it usually happens within 6-12 weeks.
The bad news. Scott is now in Kidney Failure. His sodium is still low, his potassium still high, and the labs that monitor his kidney function are much too high. The conservative therapies (IV and oral medications, time) that are being used currently are not correcting this the way it needs to be corrected. A kidney specialist came in and spoke with Scott and Janiece and discussed that Scott would be given three days of this continued conservative therapies to see if his Kidneys would start going again. If they do not respond, Scott will likely be started on dialysis. This was a huge shock to me and I'm really nervous about this.
If dialysis is started, Scott's kidney function could improve with time and he could come off the dialysis in a few days, or it may take a few weeks, or a few months. Nobody knows.
The transplant surgeon Dr. A discussed this problem with us and stated that Scott may need a kidney transplant at the same time he gets a liver transplant. If his kidneys are okay by the time he is able to get a transplant then maybe just getting the transplant will help correct his kidney function. Another possibility is that Scott receives a liver transplant and then "6 months down the road, he may need a kidney transplant" She stated that liver and kidney issues sometimes run hand in hand. Typing this out is confusing....hope it makes sense.
Another little bump in the road, is that Scott's stump is red and warm. We are terrified that he may have an infection again. The on call physician came and looked and Scott's leg tonight and started him on IV antibiotics. Scott currently does not have a fever. Please pray that this will clear up quickly and not delay proceding with transplant. The antibiotics can also be hard on Scott's kidneys, which is worrisome.
We have a long road ahead of us, but we are grateful that there is a road, a chance, a path-- we can travel to help Scott.
Feeling blessed and overwhelmed,
April
Where to begin?
Scott received two units of blood today. This blood has literally seeped life into Scott. He had more energy. He was awake. He was less confused. He got out of bed and helped transfer himself. It has been AMAZING to have more of the Scott we know and love today.
Dr. A the transplant surgeon came and spoke to us today she had good news and bad news.
A summary--
Again, we heard that Scott would be a high risk patient for a liver transplant. One risk factor is Scott's size. Dr. A stated that she has done transplants on patients larger than Scott and obviously patient's smaller than Scott. She stated that Scott's abdomen is full of fluids (ascites--a common condition with patient's who have liver problems). Because of the fluid build up, she felt like there was not going to be a lot of room for her to transplant a "large" liver and that he would likely require a small liver (opposite of what, you would think). She said that this fluid, will not be easy to get rid of because his tissues etc act as a sponge and you can't just "drain it out" easily.
We didn't ask what this would mean for Scott in the long run or if it makes any difference, to have a "small liver" versus a "big liver" in a big body.
However, Dr. A stated that she thought SCOTT COULD BE LISTED FOR A LIVER TRANSPLANT!!! She is going to talk to the other physicians and Scott may be on the transplant list "at the top" within the next week. Of course, we have no idea when a liver could be available for Scott, but Dr. A stated that it usually happens within 6-12 weeks.
The bad news. Scott is now in Kidney Failure. His sodium is still low, his potassium still high, and the labs that monitor his kidney function are much too high. The conservative therapies (IV and oral medications, time) that are being used currently are not correcting this the way it needs to be corrected. A kidney specialist came in and spoke with Scott and Janiece and discussed that Scott would be given three days of this continued conservative therapies to see if his Kidneys would start going again. If they do not respond, Scott will likely be started on dialysis. This was a huge shock to me and I'm really nervous about this.
If dialysis is started, Scott's kidney function could improve with time and he could come off the dialysis in a few days, or it may take a few weeks, or a few months. Nobody knows.
The transplant surgeon Dr. A discussed this problem with us and stated that Scott may need a kidney transplant at the same time he gets a liver transplant. If his kidneys are okay by the time he is able to get a transplant then maybe just getting the transplant will help correct his kidney function. Another possibility is that Scott receives a liver transplant and then "6 months down the road, he may need a kidney transplant" She stated that liver and kidney issues sometimes run hand in hand. Typing this out is confusing....hope it makes sense.
Another little bump in the road, is that Scott's stump is red and warm. We are terrified that he may have an infection again. The on call physician came and looked and Scott's leg tonight and started him on IV antibiotics. Scott currently does not have a fever. Please pray that this will clear up quickly and not delay proceding with transplant. The antibiotics can also be hard on Scott's kidneys, which is worrisome.
We have a long road ahead of us, but we are grateful that there is a road, a chance, a path-- we can travel to help Scott.
Feeling blessed and overwhelmed,
April
A New Day
Shelby and I had a sleepover at the hospital last night with Scott. It included ice cream at midnight, too much TLC (crazy couponers--who knew?), and a lot less sleeping.
Some of the medications Scott is on--to rid his body of the excess potassium, and to also help his failing liver filter out the bad stuff, have some, less than pleasant, "side effects" that can keep a person and his helpers up at night. It was a long night--- at least I thought so. Although, this morning, Shelby said Scott had "slept pretty good." Again, I don't know how Janiece has been doing this night after night. It's exhausting.
This morning Scott's Sodium level was 108 (it was 107, yesterday. We want this to go up--around 120 would be a great improvement). His potassium was 5.8 (down from 6.2 yesterday--we want this to go down, to below 5.0). Not a huge improvement, but I think more time is needed to see the changes we are hoping for.
His blood pressure continues to be very low 90/20's (diastolic in the 20's causes me some anxiety. It's not good. Yikes!) Because of this and some of his other lab levels, Scott is receiving a blood transfusion right now.
Scott was fairly alert this morning, but he is back to sleeping now.
We haven't spoken to any of the doctors, yet. The next update, I hope will be their recommendation. Pins and needles...
A few funnies (if we don't laugh, we'll cry)
About the only thing Scott wants to eat is popsicles. Usually his request is for rootbeer or banana popsicles. Since we have been in the hospital he has only asked for GRAPE popsicles. We have no idea where this new fondness for grape has come from, but...grape it is.
Scott talks A LOT in his sleep. Cows, horses, chores etc are just a little bit of what he said to us during the night--all while being 100% asleep. Last night, everytime anyone came into the room, or when Shelby and I would stir. Scott would ask for a popsicle. At first, we granted his request, but he would literally take one small bite of it and then immediately go back to sleep.
He continued to ask, at every noise, and Shelby and I started telling him, that he would get one in the morning, that it was late, time to sleep etc. He accepted this, and again would literally fall back to sleep 1.2 seconds after asking for the popsicle.
Around 4 this morning, Scott kept bumping the arm rail with the nurse call button on it. Each time the staff would ask over the intercom if we needed something. Each time, I would say sorry we bumped it, sorry it was an accident... Finally on the 4th or 5th time the CNA came into check on us to make sure we were okay.
Scott whispered to the aide "it wasn't an accident, can you get me a popsicle?"
Shelby and I, in our half sleep deprived delirious state-both busted out laughing. Scott was trying to whisper his request, so we wouldn't hear and talk him out of it. Just like before though, 1.2 seconds later he was snoring again, his request forgotten. Popsicle melting.
Apparently, he is listening, and apparently he's a little more awake than we think!
I'll update when there is more to update about.
April
Some of the medications Scott is on--to rid his body of the excess potassium, and to also help his failing liver filter out the bad stuff, have some, less than pleasant, "side effects" that can keep a person and his helpers up at night. It was a long night--- at least I thought so. Although, this morning, Shelby said Scott had "slept pretty good." Again, I don't know how Janiece has been doing this night after night. It's exhausting.
This morning Scott's Sodium level was 108 (it was 107, yesterday. We want this to go up--around 120 would be a great improvement). His potassium was 5.8 (down from 6.2 yesterday--we want this to go down, to below 5.0). Not a huge improvement, but I think more time is needed to see the changes we are hoping for.
His blood pressure continues to be very low 90/20's (diastolic in the 20's causes me some anxiety. It's not good. Yikes!) Because of this and some of his other lab levels, Scott is receiving a blood transfusion right now.
Scott was fairly alert this morning, but he is back to sleeping now.
We haven't spoken to any of the doctors, yet. The next update, I hope will be their recommendation. Pins and needles...
A few funnies (if we don't laugh, we'll cry)
About the only thing Scott wants to eat is popsicles. Usually his request is for rootbeer or banana popsicles. Since we have been in the hospital he has only asked for GRAPE popsicles. We have no idea where this new fondness for grape has come from, but...grape it is.
Scott talks A LOT in his sleep. Cows, horses, chores etc are just a little bit of what he said to us during the night--all while being 100% asleep. Last night, everytime anyone came into the room, or when Shelby and I would stir. Scott would ask for a popsicle. At first, we granted his request, but he would literally take one small bite of it and then immediately go back to sleep.
He continued to ask, at every noise, and Shelby and I started telling him, that he would get one in the morning, that it was late, time to sleep etc. He accepted this, and again would literally fall back to sleep 1.2 seconds after asking for the popsicle.
Around 4 this morning, Scott kept bumping the arm rail with the nurse call button on it. Each time the staff would ask over the intercom if we needed something. Each time, I would say sorry we bumped it, sorry it was an accident... Finally on the 4th or 5th time the CNA came into check on us to make sure we were okay.
Scott whispered to the aide "it wasn't an accident, can you get me a popsicle?"
Shelby and I, in our half sleep deprived delirious state-both busted out laughing. Scott was trying to whisper his request, so we wouldn't hear and talk him out of it. Just like before though, 1.2 seconds later he was snoring again, his request forgotten. Popsicle melting.
Apparently, he is listening, and apparently he's a little more awake than we think!
I'll update when there is more to update about.
April
Monday, June 25, 2012
Words Fail Me
Things haven't been well for awhile now, but everytime I've looked at this blog, or sat down to post something, words have well---failed me. I'm not sure how to describe what has been going on, mostly because I have been afraid of what the outcome might be. How do I write about it? Even now, I don't know.
I talked to Janiece today, and told her that last week, for the first time, I allowed myself to grieve for my brother. I grieve for the unfairness of it all. For his sweet children who have been forced to grow up too fast. For the burdens they shouldn't have to worry about. For Janiece (who is a saint by the way), whom I'm sure as a young bride, never envisioned this. For Scott's youth. For all he is "missing out on". For his suffering. For my parents having to witness it all--Scott will always be their baby and you never want this for your child. For the guilt I feel, for not being a better sister. I grieve.
Because we live 81.2 :) miles away from Scott, it's been easy for me to distance myself from the worry and the sadness. I told Janiece I've felt a little "disconnected" from what's been happening to Scott-only because I've chosen to be. Sometimes reality, feels like too much to bear.
But the reality is that Scott has not been doing well for quite awhile now. He has been spending most of his time in bed. Over the last little while not only has he been in bed the majority of time, but he has spent very little time being awake. Even when he is "awake", it is for moments only and most moments are laced with confusion.
He essentially is out of bed to use the bathroom and then back to bed. Scott is so weak that transfering is getting harder and harder. He can barely stand-he just doesn't have the strength. I don't know how Janiece and the kids have been doing it.
He has been plagued with pain-abdominal pain, terrible muscle spasms/cramps, and pain in his amputated leg. He's been depressed. He's been suffering and it doesn't seem like there is much anyone can do to relieve this.
Today he had an appointement at 1:00 with the transplant physicians here at IMC. I had planned to attend the appointment and meet Janiece and my Mom there. I was anxious and for once in my life left my home in SLC very early and arrived at IMC around 12:40. On the other end, Janiece, our Mom, and Shelby had left a little late because they could not get Scott into the truck. Our Dad ended up coming to help get him in the truck and realizing that we would likely need his help to get Scott into his appointment today, came to help out.
Janiece and Co. made it to the 2100 South exit in SLC, when they had truck trouble. Of course, because I had left early, I was already at the hospital. I quickly headed back to help them. To make a long story short, there was no way we were going to make it to the 1:00 appointment. Janiece called to let them know we were going to be late. Dad worked on getting the truck going again.
A little while later, IMC called and said they would need to reschedule Scott. We were devastated. Janiece pleaded, and thank God, they had mercy on us. Dad got the truck going again and we speed away. We got to IMC at 1:55.
It was highly stressful, but in reality, the tender mercies were there. The fact that our Dad ended up coming last minute--I don't think we could have handled the truck issues without him. The fact that I had arranged to come to his appointment and was close by. Janiece was able to pull into a shaded area while they waited for me--on this 100 degree day, I think this is a great blessing. The truck started, IMC agreed to see Scott still, and we made it here.
The Physician Assistant met with Scott, Janiece, Shelby, and I. He looked over Scott's labwork he had done on June 20. He had made the decision prior to us getting here that Scott needed to be admitted to the hospital in his words for a "tune up"
So, here we are at IMC, in a place we've spent too much time at before, yet desperately want to spend more time here if it means Scott can get a liver and another chance at life.
Scott's lab work is terrible. For my personal record--here are the numbers
Sodium 107--very low
Potassium 6.2--very high
Platlets 58--Low
Hematocrit 22.1 Low
Bun 78--High
Creatinine 4.08 High
Liver Enzymes
ALKP--140--High
AST--153 High
ALT-- 105 High
Bilirubin-- 3.0 High
Scott's blood pressure at the clinic today was 77/30, 79/42. His blood pressure since we have been admitted has ben 90/28, and most recently 91/36. Much too low.
Sorry, I don't have the energy to explain well, but essentially his Kidneys aren't working well, he is greatly dehydrated, and of course, as we all know, his liver is kaput.
The plan is uncertain right now. So far, they are just working on stabalizing some of his blood levels.
Tomorrow, Scott will meet in greater depth with the Transplant surgeons and discuss the possibility of transplant. A few sentences that stuck out to me today from the Doctor who stopped by earlier tonight
Paraphrasing--
"We've got to make a decision for transplant or not, soon"
"We try to help everyone-and we especially want to help you-you're a young guy, with a young family, and I would sure like to see you get a liver"
"Unfortunately, there are never enough livers available, as there are people who need them"
"Scott is a high risk patient for transplant"
"Time is limited and Scott can not live long without a liver"
It's not easy to write and it certainly wasn't easy to hear. We are at a stand still, waiting, hoping, and praying.
We are desperate that tomorrow bring positive news and hope is not lost. It's terrible to know that what we pray for will bring another family sorrow, its bittersweet to say the least. We hope though, for Scott.
Please, at this time, No visitors.
"But I will hope contiually, and praise You, yet even more." Psalms 71:14
Much Love,
April
I talked to Janiece today, and told her that last week, for the first time, I allowed myself to grieve for my brother. I grieve for the unfairness of it all. For his sweet children who have been forced to grow up too fast. For the burdens they shouldn't have to worry about. For Janiece (who is a saint by the way), whom I'm sure as a young bride, never envisioned this. For Scott's youth. For all he is "missing out on". For his suffering. For my parents having to witness it all--Scott will always be their baby and you never want this for your child. For the guilt I feel, for not being a better sister. I grieve.
Because we live 81.2 :) miles away from Scott, it's been easy for me to distance myself from the worry and the sadness. I told Janiece I've felt a little "disconnected" from what's been happening to Scott-only because I've chosen to be. Sometimes reality, feels like too much to bear.
But the reality is that Scott has not been doing well for quite awhile now. He has been spending most of his time in bed. Over the last little while not only has he been in bed the majority of time, but he has spent very little time being awake. Even when he is "awake", it is for moments only and most moments are laced with confusion.
He essentially is out of bed to use the bathroom and then back to bed. Scott is so weak that transfering is getting harder and harder. He can barely stand-he just doesn't have the strength. I don't know how Janiece and the kids have been doing it.
He has been plagued with pain-abdominal pain, terrible muscle spasms/cramps, and pain in his amputated leg. He's been depressed. He's been suffering and it doesn't seem like there is much anyone can do to relieve this.
Today he had an appointement at 1:00 with the transplant physicians here at IMC. I had planned to attend the appointment and meet Janiece and my Mom there. I was anxious and for once in my life left my home in SLC very early and arrived at IMC around 12:40. On the other end, Janiece, our Mom, and Shelby had left a little late because they could not get Scott into the truck. Our Dad ended up coming to help get him in the truck and realizing that we would likely need his help to get Scott into his appointment today, came to help out.
Janiece and Co. made it to the 2100 South exit in SLC, when they had truck trouble. Of course, because I had left early, I was already at the hospital. I quickly headed back to help them. To make a long story short, there was no way we were going to make it to the 1:00 appointment. Janiece called to let them know we were going to be late. Dad worked on getting the truck going again.
A little while later, IMC called and said they would need to reschedule Scott. We were devastated. Janiece pleaded, and thank God, they had mercy on us. Dad got the truck going again and we speed away. We got to IMC at 1:55.
It was highly stressful, but in reality, the tender mercies were there. The fact that our Dad ended up coming last minute--I don't think we could have handled the truck issues without him. The fact that I had arranged to come to his appointment and was close by. Janiece was able to pull into a shaded area while they waited for me--on this 100 degree day, I think this is a great blessing. The truck started, IMC agreed to see Scott still, and we made it here.
The Physician Assistant met with Scott, Janiece, Shelby, and I. He looked over Scott's labwork he had done on June 20. He had made the decision prior to us getting here that Scott needed to be admitted to the hospital in his words for a "tune up"
So, here we are at IMC, in a place we've spent too much time at before, yet desperately want to spend more time here if it means Scott can get a liver and another chance at life.
Scott's lab work is terrible. For my personal record--here are the numbers
Sodium 107--very low
Potassium 6.2--very high
Platlets 58--Low
Hematocrit 22.1 Low
Bun 78--High
Creatinine 4.08 High
Liver Enzymes
ALKP--140--High
AST--153 High
ALT-- 105 High
Bilirubin-- 3.0 High
Scott's blood pressure at the clinic today was 77/30, 79/42. His blood pressure since we have been admitted has ben 90/28, and most recently 91/36. Much too low.
Sorry, I don't have the energy to explain well, but essentially his Kidneys aren't working well, he is greatly dehydrated, and of course, as we all know, his liver is kaput.
The plan is uncertain right now. So far, they are just working on stabalizing some of his blood levels.
Tomorrow, Scott will meet in greater depth with the Transplant surgeons and discuss the possibility of transplant. A few sentences that stuck out to me today from the Doctor who stopped by earlier tonight
Paraphrasing--
"We've got to make a decision for transplant or not, soon"
"We try to help everyone-and we especially want to help you-you're a young guy, with a young family, and I would sure like to see you get a liver"
"Unfortunately, there are never enough livers available, as there are people who need them"
"Scott is a high risk patient for transplant"
"Time is limited and Scott can not live long without a liver"
It's not easy to write and it certainly wasn't easy to hear. We are at a stand still, waiting, hoping, and praying.
We are desperate that tomorrow bring positive news and hope is not lost. It's terrible to know that what we pray for will bring another family sorrow, its bittersweet to say the least. We hope though, for Scott.
Please, at this time, No visitors.
"But I will hope contiually, and praise You, yet even more." Psalms 71:14
Much Love,
April
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