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
Tuesday, September 18, 2012
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
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