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.
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