A Terrible, No Good, Very Bad Day

Scott is back in the ICU. When he first got there, a lot of blood work was done. We don't know any results on those yet.

They are specifically concerned about and want to rule out any heart issues, blood clots, and infection that may not be appropriately treated.

They did do some blood gases (blood from the arteries to determine how well Scott was oxygenating his body). The only news I have heard on this was that his results were "okay" but that he was working very hard to keep them there.

He did have an EKG and an Echo (ultrasound) done on his heart so far, and both of those were normal.

They are currently intubating Scott (putting a breathing tube in) while the rest of us cry in the waiting room.

Before they had us step out so they could intubate Scott, I climbed up on the bed so I could kiss his face and I told him I loved him. Despite the fog he has been living in, he responded back "I love you the most."

They are planning on doing a full body CT scan around 10:30 tonight and results should be back betweeen 11:30-12:00. We are waiting here for the results.

They are specifically looking for any blood clots, any problems with Scott's brain, and want to get a good look at his lungs.

I'll post results late tonight or early tomorrow morning.

Scott is going to be sedated for the next 2-3 days, while the breathing tube is in. Hopefully, this will allow his body to get the rest it so desperately needs, while the docs try to fix any physical problems. Our hope is when he is awakened, our Scott will be back.

Again, at this time Scott cannot have any visitors. We know how many people love Scott and are supporting and praying for him-please never stop. We appreciate it so much and know God is watching over Scott. He just needs this time to heal and get well, and the doctors think he can do this best in a calm, controlled environment. Thank you so much for understanding. We so look forward to when we can have visitors again.

Our hearts are filled with sorrow for this setback. In so many ways, he is starting over. We want nothing more than for Scott to wake up renewed and in better health than he is in today. Please continue to pray for Scott.

Back to ICU

They are getting ready to transfer Scott back to the ICU.

He is stable, but needs closer monitoring.

More details later.

Where to Start...

This will be long. I've never been one to give the "short story" so sit down and read if you have a few minutes...

Let me preface this by saying I only write these words with the upmost love and respect for my brother. I also write this with Janiece's permission. It's difficult to do, because of the (ridiculous) negative stigma that sometimes follows this type of problem. But this is real, and Scott has no control over this.

I think we all expected some "bumps in the road" but no one was prepared for this type of battle.

Two nights ago, Scott became increasingly confused. Janiece and sweet Shelby were with him that night, and the night was long and terrible. Scott did not know where he was or what was going on. He was confused, but he was not angrily confused at the time. Janiece and Shelby were up all night with him, trying to comfort him.

Initially, it was believed that the confusion was the result of a medication reaction. Scott is not on many medications. He was only on one antiobiotic (Unasyn) at the time, a diuretic (Lasix), Potassium, and the very rare, occasional pain medication. He had one dose of pain medication (in 24 hours) and he was given this many hours before the onset of his confusion.

On Monday morning, blood work was completed and there were no significant findings or changes from his previous lab work. As has been the "normal" for Scott for the past 11 days-his platelets were low and his sodium was low. Nothing that they thought would have caused his confusion.

Another thought was that Scott was confused because of continious sleep deprivation-hence the order for no visitors. Only Janiece, Shelby, and our parents were here on Monday morning/afternoon and they were only in the waiting room and not in Scott's room. The hope was that Scott could get the much needed rest he needed, if his environment was quiet and people free.
Unfortunately, sleep would not come. At some point during the day, Scott started pulling on all "foreign objects" on his body. This included his central line (the line that goes in his neck to give meds and get labs-he pulled it out about three inches) and one of the vacuums on his leg.

I received a phone call at around 7:30 last night to come to the hospital asap. Scott was more confused, and angrily confused at this point. He did not want to take any of the medications that he needs to get well...he wanted me to look them up for him because in his mind, everyone had ill intent. He recognized and trusted his family but he did not trust the medical staff.

By the time I got there, Scott was sitting up on the side of the bed and trying to leave. He did not know he was in the hospital or anything that had happened to him in the last 11 days. He did not understand why he could not just get up and walk out of here.

I looked up the medications for him, per his request, but he refused to take them then. Finally a bit later we were able to give him some medication to help calm him down and decrease his anxiety. This helped momentarily and he laid back down in bed.

The doctor was there and thought that a few things could be going on with Scott.
1)Another infection of some sort.
2)Sleep deprived confusion
3)Medication reaction

Janiece, Shelby, and I stayed in the room with Scott and willed and prayed for sleep to come for Scott. It did not. He did not sleep for one single minute last night. I should know, neither did I! He wanted to get out of bed, he wanted to pull everything off of him. He did take his medications from me, when I promised him that I had got them for him, and they were safe to take. The medications did not help him at all.

At two am, he was given a blessing--That he could be calm, that sleep would come, that the medications would work.

At three am, Janiece and Shelby went to the trailer to try and sleep. They had now been two nights without rest. Our parents came and I continued to stay with him. Sleep still evaded Scott and he was fighting some battle that only he knew.

At four am, the doctor came in to evaluate Scott, again. The doctor pulled out his central line (the rest of the way). He thought that the central line could have been a source of infection and it wasn't working right anyway, since Scott has pulled on it early in the day. They started a new IV (in his left arm) and drew blood for some further lab testing. This was not the same doctor that had previously seen Scott and he felt confident that Scott was septic (full of infection) again and this was causing his confusion. He started Scott on two more antibiotics (so three total, now) and we waited for the labs.

The lab results showed a few things...all subtle but all could contribute to his confusion.

1) Scott's lactate was 2.8. This result is high but not "scary" high, but something to monitor. It's elevated result could be showing the beginning of a new infection, for Scott. (Lactate can show a few things...a severe infection, and liver function among others. Obviously, these two were the things we were specifically looking for).

2) Scott's ammonia level had gone from 16 to 28 in less than 12 hours. This isn't a high result, but the fact that it had increased so rapidly was concerning. The liver is responsible for converting ammonia into urea and then it leaves our bodies through our urine. An elevated ammonia level can result in confusion. It also means Scott's liver was not converting the ammonia like it should.

3) Scott's urinalysis (a quick test to see if the urine has an infection, or blood, etc in it) came back questionable for a UTI. An undiagnosed/untreated UTI could lead to confusion.

A brain CT scan was also schedule today to rule out any problems there. This has not been done yet.

Scott still did not sleep and his confusion did not subside despite our best efforts.

Around 9:00 this morning the internal medicene doctor came to see Scott, as well as the surgeon who did his amputation. Both of them were very concerned about Scott. The surgeon felt like a contributing factor to the confusion was Scott's poor pain management. Most of this is Scott's choice-he did not want to take the pain medication and has had very little for having an amputation. The surgeon thought that his could have triggered his confusion.

Scott had a PICC line (basically a long term IV placed in his arm)placed late morning, to give him the iv medications he desperately needs. He had no improvement in his confusion this morning.

A specialist also came this morning and said Scott had "Medical Delirium." Basically, an acute onset of confusion that could be contributed to any of the things, I wrote about in this post, as well as a big list of other things.

Finally, he feel asleep for the first time in two days, today at 2:00pm. It is now almost four and he is just starting to stir a bit.

We are all very concerned for Scott. The doctors are very concerned for Scott. Something is definitely not right. They are considering transfering him back to the ICU tonight.

Out of all of this, the one line that the Doctor said that keeps running through my head is "this is temporary." It's so difficult to watch Scott be so confused. I told a tearful Shelby last night, to remember that this isn't Scott. It's easy to know this, because if you look into his eyes, you can see it just isn't him. He looks scared and it is heartbreaking. We know he will not remember this and we only pray that we can forget it also.

Not Good

Things with Scott, have not improved. Once again, please, no visitors. Physically and mentally something serious is wrong with Scott. The doctors have a few suscipicions, but are working diligently to pinpoint a cause. Please wait until the Scott we all love and know is "back" with us again, before coming by.

I have a huge update I need to take the time to sit down and write. But I am currently getting ready to go back to the hospital. Check back tonight and I will have more details and the time to write all that has happened in the last 24 hours.

In the meantime, please pray for Scott. Pray for peace of mind. Pray that sleep will come for him. Pray that the medications will help him. Pray for Janiece and the kids. Pray that we can find what is causing his new problems and treat them quickly and appropriately. Please pray.

No new news

Not much to update...Scott is still confused. They are still asking for no visitors and this may be the case for a few days. Our parents even came to see Scott and they were not allowed in. Scott also had his phone "taken away" so no more confused calls could be made.

We're sad about this little set back. We hope that whatever is causing this will soon be fixed and Scott will be back to being Scott.

No Visitors

Scott had a rough night last night, and the doctors have enforced a "No Visitor" policy today. Thank you for understanding.

Janiece said that last night Scott was very confused. He didn't know who he was or where he was at. He is still confused this morning.

They are running a bunch of tests to see if they can pinpoint what is going on.

They are also redressing his leg today and putting on new drains.

He did hurt his shoulder also last night, when he was trying to get up but he hasn't complained about that today.

Obviously, I have not been to the hospital today but will get phone updates from Janiece and post them throughout the day.

This isn't my life

Alternate Titles to this post:

Thank you God, for these trials. I am stronger now. Can we be done?

I couldn't make this up if I tried.

Someone wake me up!

I can't tell you how many times over the last few weeks I have told my husband, that "I can't believe this is happening to us" I really can't explain how it feels. It is some sort of strange twilight zone.

The other day on the way to the hospital, I was filling up my car with gas. As I watched the hundreds of cars driving past me, I thought about how most of the people in those cars, were going about their daily lives, not realizing how much mine had changed. How lucky, they were I thought and how unfair for me.

You see, two weeks ago I was in Georgia with my mother-in-law attending her 47 year old sister's funeral. She died way too young from pancreatic cancer. In December of 2010, as far as she knew, she was healthy and five months later she was gone.

My flight landed on Wednesday the 18th and I was supposed to leave for a work conference in Texas on the 20th. Only 18 hours later, on May 19th, my brother was lifeflighted to IMC. A few hours after that he had his leg amputated and was traveling the fine line between life and death.

I didn't go to Texas and I am so glad.

On Sunday the 22nd, my sister in law and my sweet three year old niece were in a car accident. They were basically T-Boned by someone going 60 who ran a red light. Despite some bruising and a broken arm for my sister in law, they are thankfully going to be okay.

Last night, my husband's grandpa (age 66) was bucked off a horse and had a c6-c7 neck injury. They told us last night he is paralyzed from the neck down. He was lifeflighted yesterday to the same hospital Scott is in. Currently he is on the same floor, in the ICU, only a few doors down from Scott's old room.

You know the saying-"It could always be worse?" Well, last night proved that it really always can be. I'm so sad. It just doesn't seem possible that this could be happening to people I know, love, and care so much about. Now when I go to the hospital I see my side of my family and my in laws and it just isn't right.

Once again, it feels like time is standing still for our family, while the rest of the world is still spinning.

If you've read this blog in its entirety you would have read the different scriptures, I've included on some posts. I haven't been getting home from the hospital until late most nights. Each night despite the late hour, I can't turn my brain off. Part of me thinks that if I lay down in bed before sleep comes, I'll be consumed with grief. So each night, I have been studying my scriptures under a different subject. Some of my subjects have been- grief, the Atonement, love, weakness, suffering, strength, eternal families, and more.

Today, my thoughts have once again returned to the Atonement. As I was reading, I thought about Heavenly Father watching his Son, Jesus Christ, on the cross and wanting nothing more than to save him, to ease his suffering, and yet he withheld, because of his eternal love for each of us.

I want nothing more than for Heavenly Father to ease these burdens from my family. My vision is not as clear as our Heavenly Father's and I'm selfish. I hate this. I want to go back to three weeks ago, when we all went about our daily lives and every.single.member of my family could walk with ease.

I know there are so many blessings to be seen throughout all of this, and I'm praying each day for the ability to see more clearly how truly blessed we are. I also think it's okay to feel sad right now.

"For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life." John 3:16

Sunday's Report

Can you believe it's been 10 days since we entered this "new" stage in our life? Feels like a moment ago, and yet a lifetime ago, all at once.

I'm happy to report that Scott is doing pretty well. His nurse yesterday morning was excellent and called the docs to get Scott's pain medication changed around a bit, which is working better. The only problem though, is Scott "wants to tough it out". I keep trying to remind him that it is easier to stay on top of it, rather than chase it. Scott overall has had very little pain medication-I'm completely amazed. I used to work for Acute Pain Services, and keep trying to convince him he needs more....but he is strong and resilient and isn't taking much. I know it bothers me more than him, because I just don't want to see him hurt.

His sodium and potassium still haven't balanced out and returned to normal yet. They are continuing to give him IV replacement of these to help. He is still on a water restriction but can have other fluids so that is helping. His sodium was at 126 today (normal 135-145).

Scott was carrying a lot of extra fluid and was SO swollen just a few days ago. He continues to receive Lasix (a diuretic to get the fluid off...this diuretic also effects his sodium and potassium levels) and from looking at him you can tell that it is working. His once tight wrist band now easily slips off. He is also having a normal output now.

Today, Scott "hopped" from point A to point B. From what I hear it was pretty amazing. He made a goal to do it and he did! He is trying to weasel his way out of going to rehab, and the evil sister (me) is trying to convince him of the importance of going.

Because of all the fluid and now losing all the fluid, Scott's poor stretched skin is very delicate. He has a few little blisters that are being watched closely.

Remember the blister I wrote about a few days ago on Scott's amputated leg? A special wound doctor came in to evaluate it. He lanced and drained it and redressed it. He also added a third vacuum type drain to Scott's leg and so far this is helping. He did this yesterday and when he looked at it today again, he wanted to talk to Scott's surgeon about redoing Scott's entire leg dressing/drains. We haven't heard anything else on this, yet.

The liver transplant doctor also came in to see Scott today and helped us set some goals and have a timeline. He really feels like Scott's immediate problem is obviously, to get over his current illness and heal well. Scott needs to fully heal from this and right now his liver issues are stable. They will watch his lab results closely, but truly the focus now, is to heal and have the best health possible before entering a risky, big surgery like a liver transplant.

I'm so proud of Scott and realize everyday how important family is. I love my family.

May 27, 2011

Scott is doing pretty well today. He is still having some pain, but much more tolerable than yesterday.

His sodium is lower today than yesterday. :( Today it was 122 (normal is 135-145). So once again, all he wants is wanter, and that is the one thing he can't have.

He also has a medium size blister all along the side of amputated leg, underneath the dressing. We are waiting to talk to the doctor about this. He has been having a TON of drainage out of that leg too, which they said was okay.

Scott loves hospital food!

Hannah giving Scott some loves. Remember- "It's okay!"

More detailed update later....

One more day down

Scott has had a pretty good day.

Pain is still an issue. Overall he does feel better than last night, but he is still quite painful. If I wrote all the phrases Scott, said this blog would be rated R. :) So, use your imagination when I asked him how is pain was tonight.

Part of the problem was that when he was getting up today, he accidentally hit his "stubbie" (this is the nickname Scott has chosen for his amputated leg) on the chair, really hard. Where he hit his leg, is still bothering him.

He is also having muscle spasm pains. I think these are bothering him the most. Janiece did ask the doctor this morning if he could have some muscle relaxers or something, but the doc did not think they would help much. In the last surgery, to create "stubbie," all of Scott's leg muscles were literally pulled down and layered under his upper leg bones, a few inches thick. The doc said that this was the way they "have done it for years." He said that before they did this technique that the bone actually had a tendency to work it's way out of the skin! Ouch!

We're glad that they have this technique to prevent this from happening, but you can imagine the stress that the muscles have been put through, and the pain that it is causing, now.

Guess what? Today the doc told Scott and Janiece that his amputated leg weighed 73 pounds!! Heavy with infection and fluid! Mick weighs 78 pounds. I still can't believe it.

The emotions are setting in a little bit, and Scott has been a little sad, today. Time slows down in the hospital and all we can do is think. He's been thinking about what is going to happen when he gets home. He has been thinking about how their home needs to modified and all other things that providing husbands, think about. He is surrounded by love, support, and encouragement and we are taking it one day at a time.

I received even more cards in the mail today and brought them right up to the hospital. His walls in his new room are filling up! Thank you! One of the nurses said "You're room looks like a home!" This is exactly what I wanted! Again, thank you so much.

Just spoke to Janiece...morning report

I just got off the phone with Janiece and Scott is having a better today. Praise God!

Scott's pain is better controlled today. He was switched back to the oral pain meds and we hope those will work better for him. According to Janiece, the IV pain meds were making Scott "very loopy" last night, and the nurse was concerned. They were also making him nauseated, so with those two factors in place, the decision was made to switch back to the orals.

With that switch, Scott needs to eat some solid foods with his pills, or chances are he will still be nauseated! Janiece force fed , lovingly assisted Scott in eating some food this morning. :)

Scott's swelling is improving. His hands were so swollen that he could hardly hold anything in them. Today he is able to move and use his hands!

His WBC count was 12.0 today! It is going down! Again, normal is below 10.0 This is great news.

His Sodium is still a little low at 126 (normal is 135-145). They will recheck it again later today.

Scott is more awake today and using his cell phone, just like old times. This morning Janiece ran to the trailer to get a few things and in the meantime, Scott called his sister Melissa (the nice one :) and wanted to chat. When he is awake he really wants someone in the room with him.

"He giveth power to the faint; and to them that have no might, he increaseth strength." Isaiah 40:29

The "Evil Sister" and a few other funnies

Throughout all this, Scott has given us many times to laugh. It lightens the mood and helps us to know that our Scott is still in there. I can't say if we can blame any of these on his medication fog or just blame them on Scott! :)

The evil sister...

I can be as equally bullheaded as Scott. Throughout his hospital stay I have been the one expecting that extra 10% when I know Scott is already giving 100%. For example, when we helped him get in the chair for the first time, Scott was ready to be done, he was exhausted. He said "I gotta sit back down" (on the bed) and my response was "no, you're going to sit down in the chair" and guess what--He DID it!

The next day as I was sitting with Scott alone in his room, the physical therapist came in and instructed us both on some exercises he could do while he is in bed. Guess who the drill Sergeant was, making sure Scott did ALL his exercises that day? Even when he told me "he had had enough" I told him he could do two more.

Scott is also supposed to use his incentive spirometry every hour (a little machine that tells us how his lungs are functioning and also helps to provide them with some "exercise", reducing Scott's risk of getting pneumonia). Well I am sure you can guess who was putting that "damn plastic thing" (Scott's words) in his mouth every hour...that's right, me!

Well one evening after all these events, I was helping Scott's nurse give him a "bath" (Scott says-that ain't no bath). The nurse said "Scott, you sure have a nice sister to help give you a bath, I don't think I would be helping my brother." Scott looked up at me and said "actually, she is the evil sister!"

I think he is right! ha! :)

Our mom, me, and Scott. Imagine me saying "Scott you only did 19 leg lifts instead of 20!

Scott's Pet...

Mick made Scott a little ceramic turtle at the art fair, he went to, when he was staying with my husband. He made a little box for his turtle and wanted to give it to his Dad. He convinced Janiece that Scott needed a pet, and that the turtle he had, "didn't move much" He had Janiece convinced that he did, in fact, have a live turtle and that it could be Scott's therapy pet. Janiece had a difficult time convincing Mick that he couldn't bring in any animals to the hospital. We all had a laugh when Janiece saw Mick's pink painted turtle. It now resides in Scott's room.

Water...
We all know how much Scott has wanted for water throughout this hospital stay. One day he was allowed some ice chips. This did nothing for his thirst and only made it worse when we offered again and again to give him some ice chips, but all he wanted was a big ol' gulp of WATER!

Finally, he told Shelby, that she needed to eat the ice chips and he started feeding them to her.

More with the water...
The day that Scott could not have a single drop of water, was a terrible day. Scott was borderline furious about it. Every.single.person that came into his room, Scott, begged and pleaded with, to get him some water. He even offered some, $500 just for a sip of water! :)

The nurse came in to give him some pills, with about 1/4 inch of water in a cup to swallow them with. Scott took the pills and then secretely held on to the cup. This became Scott's "paci." He hid it under the blankets and in his gown, so the nurse wouldn't find it. Having that cup, in his mind, meant he was one step closer to getting a drink. He would not let anyone touch his "paci" and did a great job of hiding it!

Scott and his "paci" don't let it fool you--that is a death grip!

One non-water allowed morning, Scott's nurse started talking about getting up in the chair later on. Scott threw his hands in the air and said "I am NOT getting up until someone gives me some water!" The nurse said, "Scott, I'm not worried about it!"

Cards...
I can't thank each of you enough for sending the cards. I have absolutely loved getting my mail each day and seeing the cards. It is even more enjoyable though, to take them to Scott. He loves them. We really truly have almost plastered Scott's walls with love and encouraging words. One of the nurses said "I don't think I have ever seen this many cards!" Thank you!

A funny story about the cards...our cousin Mrs. Fuller, 5th grade teacher extraordinaire, had her classes make cards for Scott. It was so fun to read them and hang them on the wall. Here are some of my favorite quotes from the 5th graders cards:

"Have a great weekend!"

"Even though you only have one leg now, you can do anything you want! You can play sports now or anything!"

"I hope your procedure thingy goes well"

"I have never been in the hospital before, is it scary?"

"My name is Ambrosia, but lots of people can't remember that name. If you can't remember it, just try to remember Nicole, to help remind you of it"

"Just think +, not -"

"Remember to smile like this boy" (With the cutest picture of a boy with a huge smile and...only one leg)

Thank you Mrs. Fuller! The cards are perfect! We love them!


More funnies:

On Scott's second day in the hospital. He was ready to leave. He told us all to plan on him going to work that afternoon. After multiple explanations that he was going to be in the hospital for awhile, he gave up on us and started devising his own escape plan. All he needed "was a generator, to get that truck out there (pointing out the window) going, and he was outta here!"

After Scott got in the chair for the first time, he was rewarded with some jello and other liquid type foods. Janiece was to the side of him helping and I stood in front of him helping. A nurse walked by and said "What great service!" Scott gave her a smirk and then put a certain finger up, by his leg. Thankfully only Janiece and I saw, and we couldn't help but laugh!

The sleeping beauties....Scott and our Dad, Doug. The nurse came in and asked which one "got the shot?" and Scott immediately pointed at Dad!

Again, Scott has had such a positive, uplifiting attitude. He is still funny, still swears like a sailor, and knows that this had to happen to save his life. He is okay with it. He wants to move forward. We can't wait to keep moving forward with him.

A little better

Scott is doing a little better tonight. When I was in seeing him and asking all my questions..."How is your pain, how is your nausea?" The only answer I got was a half asleep "Good."

I'll take it. :)

Scott was having a "sharp, stabbing pain in his (amputated) leg today." This has caused him much suffering today. Finally his pain is tolerable and overall his nausea has improved. In his words "it comes in waves"

He is able to be off the oxygen when he is awake but needs it while he sleeps....which is still most of the time.

He has been able to drink the few liquids he has been offered today, but doesn't have any appetite for solids. He looked at his dinner tray tonight and told me "nothing on that is edible." We've offered to get him whatever he wants but he isn't hungry for anything, either.

Shirts that the kiddos made and wore "Scott is our #1 fighter"

Here is the lab report for today:

As I was leaving they were drawing his labs to check his sodium again. I haven't heard the results yet. Pray that his sodium level returns to normal and his kidneys will be functioning the way they should. Just like we learned yesterday (remember the sodium and potassium inverse relationship? :)) Scott's potassium today was 4.2 which is normal so just like the textbook says...today his sodium is low. His body is working overtime trying to correct itself.

WBC today was 15.1 (normal is below 10.) Again this is trending upward and we would like to see it going down. This isn't worrisome yet because it is believed that it is Scott's body trying to heal from the multiple surgeries etc and not a sign of infection. He is still on the IV antibiotics so if the elevated WBC count is from infection the antibiotics he is still on should be killing it.

His platelets today were 66--(normal is above 150), they are down a bit from yesterday but hovering right around Scott's "normal". Our livers are responsible for the synthesis of plasma proteins, including our clotting factors--platelets. Basically, Scott's liver isn't doing its part to keep his platelet level in a normal range.

Overall, Scott feels better than he did this morning. His room is full of cards, signs, flowers, and of course, the combine and herd of cows Mick brought for him. :)

My three year old daughter, Hannah loves Scott. I hate to even tell this story, but my Mom says I need to document it. Anyway, when I explained to Hannah that Scott wasn't going to have his leg anymore she said "I can't be his friend anymore!" It broke my heart. Since Scott is no longer in the ICU we were able to take Hannah in to see him today. I was so worried about how she would react. Scott wanted to show Hannah his leg. Hannah looked and said "It's okay!" She immediately wanted to see his other leg to make sure it was still there.

On the ride home Hannah said "I can still be Scott's friend, his cut leg is okay!"

May 26, 2011...Two steps backward one step forward...

Scott was transferred from the ICU to the 8th floor! In the doctors words he is "movin' on up!", literally and figuratively. It's great, that he is stable enough that he can be transferred to the medical floor and now Janiece can stay in the room with him at night..which is a huge blessing.

Scott had a looooooong night last night. Poor Janiece said she went to bed sometime between two and three (the hours and the days have long since melted together!) because Scott was so uncomfortable and really needed her. He was consumed with pain and nausea.

Finally, this morning these two problems are "a little better."

They did trial Scott off the oxygen, but unfortunately he still needed it. It's okay, I know he will be able to be without it soon.

And one more bit of bad news...Scott's sodium is low again today at 126 (Normal is 135-145)! This means fluid restriction again....bummer news. He can have 1 liter of fluid (roughly 33 ounces) today and none of that can be water. They want him to drink gatorade and other fluids that have sodium in them to replace what he has lost. Scott has actually preferred drinking the water, but at least its better than nothing, I guess!

In the back of our heads we all knew that these rough days immediately after his big surgery yesterday, would be likely. I guess I had hope though, that he could more easily return to how well he felt the morning of and the night before. It's hard to see him "start over" in so many ways.

"Perseverance is not a long race; it is many short races, one right after the other. " -Walter Elliot 1842-1928

End of night report-more pain

I just got off the phone with Janiece and wish I had better news. She said Scott is still not feeling very well. He is still really hurting and now he is very nauseated. They are treating him aggressively with pain medication and now with nausea medication, but haven't gotten on top of it yet. It's going to be a long night. He is getting a blessing right now, I have faith that this will help.

Please, please, please pray that Scott's pain will be controlled and he can rest comfortably tonight. Being in that much pain is absolutely miserable.

Please pray that he will not be nauseated.

Pain

Scott has slept most of the day. He has been waking up more the last 2-3 hours and now we wish he could go back to sleep. Because now, that he is awake, he is having a lot of PAIN. He is getting IV pain medication and oral pain medication, but we're chasing his pain and trying hard to get on top of it again.

Please pray that the pain medications can work well for Scott, with minimal side effects. Please pray that he can be as comfortable as possible.

He did have a second blood transfusion today (2 more units) and 2 units of platelets.

He also had his art line removed after the surgery, but still has his central line in to get IV fluids/medications.

He has been drinking a lot of fluids today but has not had an appetite or felt well enough to eat any solid foods, yet.

Here is the afternoon lab report:

WBC 14.8-again elevated but this is likely to his surgery. Normal is less than 10.0.

His platlets are the best I have ever seen (thanks to a lot of blood/platelet infusions). Today they were 74, they have ranged anywhere from 50-60 while he has been here. Again, normal is above 150.

His potassium is in the normal range today at 4.2.

His new cultures (to see if there is any bacteria) remain negative-meaning that likely he is infection free and the antibiotics killed the enemy!

His vital signs are stable. His color looks good, the main obstacle we are having now, is getting his pain under control.

Scott's leg looks really good to me. He still has the vacuum coming out the bottom of the amputation and a small drain coming out the side of his thigh.

They have discussed possibly moving Scott to the medical floor tonight or tomorrow. There is no set plan with this move-just to wait and see how Scott is doing.

I have received SO many cards in the mail for Scott-Thank you. I have loved bringing them up and showing the m and reading them to Scott. They really make his day. He knows how many people love him and I know it helps him get through each day. I need to post a new picture because almost two walls are full of cards and pictures.

We are so relieved to have this day almost over with. Tomorrow is a new day....

Minute by minute update... :)

At 12:50 Mark and Shaunie were reunited. They had a long embrace from 12:51-12:55, it was very passionate and we enjoyed every second of it.

As we watched from the fifth floor window, this photo was taken.

This was a joke for Shaunie but after popular request it was demanded that I post this on the blog. :)

We love you Shaunie and Mark! We especially loved every.single.one of us, watching you from the window! The window still has the face prints!

Out of surgery

This is Scott and Janiece minutes before he was taken into his surgery this morning.

The blessing crew this morning. Thank you!

Scott came out of surgery at 11:20 and we just finished speaking with his surgeon. He received a great report!

They removed about 4 more inches of Scott's leg and were able to close his wound. The doctor said his wound looked "clean" and infection free. New cultures (to check for any bacteria) were done and so far they are negative. Yeah!

Scott's platelets are still low and he did receive another blood transfusion and a platelet infusion during the operation.

The doctor said, if all goes as planned, Scott would stay in the ICU for a "few more days" and then be transferred to the medical floor. He will stay there for 7-10 days. After that he will go to rehab for 2-4 weeks. There is a possibility he could be transferred to a hospital closer to Tremonton for rehab but they said that because his liver team is here they may recommend that he stay.

Scott has a new vacuum on his wound to continue to get rid of the excess fluid/drainage and this will stay on for 2-4 weeks to help his wound heal.

Scott has a long road ahead of him but we are so very grateful that Scott is alive. We know how lucky we are and how close we truly came to losing him. The doctor said that he has seen "lots of healthy young people die from this." He also said that when he did the initial amputation that the infection was a little above his knee, he said that Scott was in "bad shape" but that when this type of infection gets up into thigh that things are really bad. Again, we are so grateful.

"...Let thy heart be full of thanks unto God" Alma 37:37

Off to surgery in good spirits...

They just took Scott into what should be his fourth and final surgery. He was awake and in good spirits and in his words he was feeling "good". He even made a few phone calls on his cell phone before they took him back!

He received a wonderful blessing from our Dad and his cousin Johnny. Scott specifically asked if Johnny could come and we we're so grateful that he was able to. We're so grateful for the power of the priesthood.

Today's surgery will take 3-4 hours. The plan is to amputate his leg at mid thigh (it's currently right at his knee) and create a "flap" that they can use to close his wound.

They did discuss moving Scott to the medical floor, possibly tomorrow, if all goes well with his surgery. He will come back to the ICU today, after his surgery, and then we will see how the day/night goes.

We're so happy to be getting what we hope will be this "final" surgery over with. This feels like the last obstacle that needs to happen before we can really start this healing/recovery process.

I'll update as soon as his surgery is over and we talk to the surgeon.

Ending on a positive note

Scott's night has ended more like it started today-good. He has been awake a lot more this evening. Janiece left for this first time for a few hours tonight to attend Shelby's Softball banquet and Scott really wanted her to leave a cell phone so he could call out if he needed. He has been talking on the phone, just like the old days! :)

He has had a few visitors and is really enjoying them. Now that he is awake more he wants someone to be in the room with him. The ICU "closes" to visitors for shift change/report from 7-8:30 and Scott tried to talk the nurse into letting our parents and myself stay during that time so he wouldn't have to be alone. No such luck, though.

We went down for dinner during that time and Scott called us at 8:25 and said "They said you could come back so get in here" When we came back Max and Karen, Alan, Steve and Chelsea were here to see him. Somehow we all came back at the same time, when the nurse saw how many people were in his room, she came in to "remind" us of the 2 visitors at a time rule. Scott was trying to sweet talk her into letting us all stay! He seems more and more like himself today. As I am typing this by his bedside he is reading text messages!

He is no longer feeling nauseated and his pain is under control. He is still on track for surgery tomorrow morning, which I am nervous that in some ways it will be like "starting over." Tomorrow will likely be a rough day so I am so grateful his night ended on such a positive note.

Spoke too soon

This picture is from a few days ago. I haven't uploaded any new pictures since then.

My last report was a little premature. When I got to the hospital around 2:00 and talked to Janiece, Scott, and the nurse, I was told that his day started out pretty good but has since gone down hill.

Late this morning Scott got up to sit in the chair. He sat in the chair for about 75 minutes, when it was time to get up he was feeling terrible. He was very nauseated and weak. So weak, in fact, that he could not get up from the chair on his own and had to be lifted back into bed with the special chair lift they used a day or so ago.

He has been sleeping a lot since then with small moments of being awake. When he was awake, I asked him how he was feeling and in his words he said "shitty."

Some background information--Scott's leg has two "vacuum" type drains that come out of it, these are in place to rid his body of the excess fluid/drainage. One comes out the center of the amputation and one comes out of his upper thigh. When he got up today with the physical therapist the drain coming out of his upper thigh got pulled a bit and hasn't worked well since. They had a wound specialist come in and look at it, and the little suction pad had been completely pulled off and had to be replaced. This was VERY painful for Scott. It was terrible to watch. Prior to this happening he had had A LOT of drainage coming out of these little pumps today, about twice as much as a normal day and it's only 3:30... Now that both of them are working he is having even more drainage come out.

Please pray that the amount of drainage coming out is acceptable and that Scott's leg is healing. Please pray that this will not delay his surgery tomorrow.

Here's today's lab results:

Scott's WBC (White Blood Count) was 10.6 today..so just very slightly elevated compared to yesterdays result of 10.5. Again, a normal is below 10.0. It is good that it is not dramatically increasing but we would prefer to see this trending downward. An elevated WBC count can mean that Scott still has some infection going on.

His potassium is low today at 3.1 (normal is 3.5- 5.2). So IV potassium is being given to him today. Having a low potassium can sometimes result in an abnormal heart rhythm (among other problems) and if you remember Scott's heart "acted" up a few days ago.

To recap...on Saturday Scott's heart rate spiked to the 180-200's. We were told that it was SVT (Supraventricular Tachycardia-basically a high heart rate), then just yesterday his nurse mentioned that he had gone into Atrial Fibrillation (an abnormal heart rhythm-basically his heart muscles were quivering instead of having coordinated contractions) He was put on the medication Amiodarone, which completely resolved this problem. He remains on this medication but was switched to an oral form today instead of having it through his IV. His heart has been completely normal since that episode.

I talked to his nurse today to ask if he truly had had a-fib or if it was just SVT and she said that there is "controversy" over it. Some of the docs thought that it looked like a-fib, while others thought just SVT. Either way, he is being treated correctly and has not had any problems since. The doctors believe that this was an isolated event and will not cause Scott any further problems. We just want his potassium to get back into the normal range to not put any increased risk on his heart.

Another interesting fact is that sodium levels and potassium levels have an inverse relationship-meaning generally when sodium is low, potassium goes up and when sodium is high, potassium goes low. If you remember Scott's sodium has been low, today it is 136 which is completely normal. His potassium has been normal until today (when his sodium increased to "normal") and now his potassium is low. So at least Scott is following the textbook! :) Again, they are trying to correct these abnormalities by giving IV electrolytes.

We haven't seen the transplant team since Scott was admitted to the hospital. His issues are separate, but we would like to speak to them to ask some questions. Janiece asked again and the case manager spoke to the transplant team today to ask when they could come. They will either round tomorrow or Friday. I think Janiece was going to ask for them to come on Friday, as tomorrow Scott will be in surgery and we will be in the surgical area, to speak to the surgeon. We don't want to miss + We will wait and see...we're anxious to speak to them and get some answers to some questions.

In other related liver news...every few months Scott has had lab work to tell what his MELD score is. A MELD score is a calculation based on lab results that tells us how Scott's liver is functioning. It can also give us a clue of when Scott will need a liver transplant. Among other factor's the MELD score can determine where you fall in the wait for a liver. There are four categories:

1-A MELD score of 10 or less-means your liver functioning is fair. Most don't have any symptoms of anything being wrong at this point.
2-A MELD score of 11-18 means that liver functioning is decreasing. This is when most people are diagnosed with liver failure. Symptoms have started.
3-A MELD score of 19-24 means liver functioning is very compromised.
4-A MELD score of 25 and above means you need a new liver ASAP.

According to what we learned when we meet with the liver transplant team in October of 2010- most people are "at the top" of the waiting list when their MELD score is 21. Scott's MELD score has been anywhere from 17 to 18. The last result was 18, according to Scott. Since we haven't seen the transplant team yet, we haven't heard the "official" news from them. I really wanted to know what Scott's MELD score was now. I got all his lab results today and figured out how to calculate Scott's MELD score. I've done it a few times and gotten the same result each time and feel confident that this is accurate. According to my calculations, Scott's MELD score is 17. This is good news, Scott's liver is maintaining its current function and not decreasing. It will really help Scott to be able to heal from this before he needs a liver transplant. Still though, it will be great to hear the transplant teams opinion.

His vital signs are stable, with his blood pressure only mildly elevated 150-160s/70-80s, today. He is not confused at all anymore.

More updates later.

May 24, 2011-Phone Report

I haven't been in to the hospital yet. My "shift" starts at 2:00 today. :) Here is the am phone report though.

Scott is having a GREAT day, so far! He slept really well and it seems like he slept off some of his lingering anesthetic last night, because today he woke up really alert.

He is not confused like he was last night. He has had a lot of visitors and enjoyed seeing each of them.

We are still on schedule for what we hope will be the last surgery tomorrow morning. This will be another difficult day for Scott. This surgery will be completing the amputation and starting the process of closing his wound. Currently Scott's leg is amputated at about the top of his knee cap. When the surgeon is finished it will be amputated mid thigh. This surgery will be much longer than the 2nd and 3rd surgeries he has had. It will be similar to the very first surgery he had where they initially amputated the lower part of the leg....long and complex. The difference is though that Scott is much healthier going into this surgery. Please pray tonight for Scott and that his surgery can go well tomorrow.

We are also hopeful that after this surgery (maybe Thursday or Friday?) Scott could be transferred from the ICU to a "regular" floor. This is good and bad...if he moves it means he is well enough to do it, the visiting policy is more lenient, and someone could stay in his room during the night if they wanted to/he wanted them to. The only negative part of it is, in the ICU the nurses generally have 1 or 2 patients. On the "regular" floor the nurses have 5-6 patients. We kind of like the one- on- one attention! Scott has received wonderful care and I am sure this will continue.

It was fun to get the mail today and see the cards for Scott. I can't wait to take them to the hospital and open and read them to him. Thank you! Keep them coming!

Look for another update tonight.

Tuesdays with Morrie

This is a "Feeling post"...expect a new update in the morning! :)

In 2008, I was required to read "Tuesdays with Morrie" for one of my college classes. I loved this book and would recommend it to anyone. There were so many principles and lessons from the book that I wanted to remember always. This book was on my mind today. Since I don't have time to read the book again, I wanted to read the paper I wrote about it. Yes, I searched through all our old computer files trying to find it and sure enough, after reading it, I was glad I spent the time looking for it.

Here are a few experts from my paper.

"Suffering is a cruel word and just the mentioning of it, brings my emotions to the surface and a pit in my stomach. Whenever I think of suffering I immediately equate that with a poor quality of life. I have heard so many people say, they "just don't want to suffer" or how "lucky so and so is because they did not suffer." I agree. I don't want to suffer, I don't want my body to hurt, but most of all I don't want to look into my loved ones eyes and see suffering.

Some may say that suffering can make people humble. It can evoke compassion in those who don't have any. It can bring life and problems into a different perspective because all of a sudden, due to suffering, other things don't seem so bad. This may be true, but it doesn't make suffering any better or easier. Why does it take something so bad to make someone or something, seem good? I don't want to have suffering in order to have good.

From reading this book, I have learned to love my family more. Money is not important, work is not important. I have always thought that after I finished school, I would have enough money to take my children on a fun vacation, or my work hours would be better, and I could spend more time at home. While I still hope for these things, I realized they are not necessary for my happiness or for my children's happiness. My kids are happy at the free park down the road or finger painting with vanilla pudding. I keep waiting for these "other" things that I hope will make our lives better, when I have everything I need making soft sighs in their beds right now.

My husband is a history buff and we have spent quite a few evenings walking around cemeteries. I love to read the headstones and imagine the people they honor. On a twin girl's headstone it read "She gave her life, so her sister could live." Another read, "a hero to the end." Each of these has made an impression on me. Asking what I would want written on my headstone is a difficult question, because I don't think I am deserving of anything so grand. I only hope that I can be remembered as someone who did some good in this world. I want my family to be proud of me. I want those who I knew, to still feel and remember love from me, even when I am not here. Whether or not this is eloquently worded on a tombstone or not, makes no difference to me, as long as people know it."

April Greener

February 2008

As I have written before, it has been difficult for me (and everyone) to see Scott suffering. It has been equally as difficult to see Janiece and Scott's children suffer. Sweet 10 year Mick, was very brave when he was told the news about his Dad. He had a solemn silence about him and he didn't really say much. It was a day or so later when he asked when Scott's leg was going to grow back. He really believed that this would happen and in our grief we hadn't made sure he understood.

Things have sunken in for Mick and he's nervous to see his Dad's "new" appearance. He's home tonight-one of the first times, and the report received, was that he was having a hard time. He hasn't let go of his Dad's ball cap since Scott was admitted to the hospital and wears it every second he can.

Did you know that today, Mick broke the record in his school's pentathlon for the long jump and for making the most baskets in a certain time? We are so proud and want his life to be full of happiness.

Scott and I are complete opposites. I'm the baby of the family and it feels like by the time I was old enough to remember much, Scott, the oldest, was getting married and moving out. For perspective, I took Shaunie (Scott's oldest) to show and tell when I was in fourth grade. I remember bragging to my friends that I was an aunt because no one else my age was.

I was always interested in music and Scott was only interested in not hearing my music. :) He was interested in farming and all things country and I couldn't wait to move where I could get to a store in 5 minutes, if I wanted to. I blame Scott for teaching my three year old her first swear word because she never heard that at our house. :) Despite our differences we always loved each other and enjoyed our time together.

As I continued to move further and further south, we didn't see each other as much. I heard about his health struggles from a distance and helped out and came home as much as I could. Just like I wrote in my paper years ago, I have been reminded again, just how important family is. I am disappointed in myself, that it took something like this to happen, to remind me. I've hugged my babies a little tighter, I've seen extended family members that I haven't seen since I was little, and I've stopped myself from saying that cross word or elevating my voice, because truly, are socks on the floor worth getting upset about? Why does Scott have to suffer, so something good could come?

Scott's attitude is inspiring. Janiece's attitude is inspiring. I love him so much and I love Janiece so much for loving my brother unconditionally. I've never heard Scott complain or even express one ounce of sadness over losing his leg. Janiece has not left the hospital for one moment, because she wants to be there for Scott. Before, when Scott was planning for a liver transplant, he had asked Janiece to stay at the hospital with him. The circumstances are different, but Janiece has kept that promise.

I have looked at every card written and have seen most faces who have come to see Scott and can't help but get teary eyed. It shows me how much people love my brother and his family. It shows me that my brother is a good person. It shows me how good people are and how willing they are to help and serve others. It shows me what I want to teach my children and how I want to live my life always-not just when its convenient.

God is good.

In-between Day

Not sure how to rate today. Let's start with the positive.

Scott's color looks excellent today, better than I've ever seen.

He was able to eat some dinner-he had some noodles, some gravy, and some carrots.

Scott sat in the chair for about 90 minutes today. When he got up he actually "hopped" a little backwards to move him where he needed to go.

The blister on his back did pop but has not gotten any bigger and is not red.

He has slept most of the day...good and bad.

Now things we would like to see improve....

Scott is quite confused tonight. He is pleasantly confused...making some funny off the wall comments, but he hasn't been confused like this before, and it does worry me. They are unsure if this is a lingering effect of his anesthesia this morning. They don't think it is related to any of his current medications because none of them are "new" today...he's had them all before and never been confused before.

His Right leg and foot is pretty swollen. This may also be attributed to the length of time he was sitting up in the chair and his right foot was hanging down. We are watching this closely.

His blood pressure remains elevated- 160s/80s. The nurse said she did talk to the doctor about this and he wasn't concerned at this point, and did not want to start any new medications right now.

Scott had a lot of drainage out of his wound today. They attributed this to how long he was up in the chair today-that this must have increased the drainage output.

He is having pain in his left leg now and we are unsure if it is pain from the surgery today or "phantom limb pain" He keeps wanting his left leg rearranged with pillows and blankets and it seems like we just can't get it comfortable. He just asked for some pain medications, so hopefully this will help.

Things are okay, Scott is stable. He looks healthier than I have seen him in a long time. He said some pretty funny lines and gave us all some smiles and laughs.

Some more info on today's surgery and labs.

I'm typing this while I watch my brother sleep a few feet away.

He is still pretty sleepy from his surgery this morning and has only woken up for a minute or two a few times. He was given some pain medication before we came in and appears comfortable.

Janiece and I did have a good talk with his nurse though, and I was able to look at his lab results. Here are the details:

They were able to use an LMA (laryngeal mask airway) today for Scott's surgery rather than fully intubating him. This is good. An LMA is generally a little easier on the throat. I have been so worried about his multiple intubations, I'm relieved that they were able to use this today as it should make it so Scott's throat does not feel so terrible.

Scott's WBC count today was 10.5. His WBC count yesterday was 9.9. So, not a huge increase but we wish it were heading the other direction. Depending on what source you use, a normal range is generally 4.5-10, so again, not that elevated.

His sodium remains steady at 135-the same as yesterday. This means that when he is awake enough, that he will likely be able to have some fluids today. This is a huge blessing.

His platelets are still decreased and were lower than yesterdays value. Today they were 50 (I can't remember for sure, but I think they were 67 or 68 yesterday). A normal level should be above 150. Scott was given 4 units of platelets during his surgery today.

AST is 171 (normal is 5-35) and his ALT is 64 (normal is 7-56). These tests tell us how Scott's liver is functioning. Obviously, it is impaired, but I don't know what these results would have been before Scott got sick. We are still waiting to have a consult from the transplant team and asked again today if they could come. We have a lot of questions. If I am here during rounds I am going to try and get a day and time, when we can expect them. I want to make sure that we can ensure that we will be here to ask our questions.

His albumin today was 1.6. Yesterday it was 1.7. Normal is 3.3-4.8. Yesterday his low albumin level started talk of the necessity of a feeding tube. I asked his nurse if a feeding tube had been discussed again today and he said as of now, no. However, "the ICU team" has not rounded on Scott yet this morning and those things are discussed during those rounds. I really hope they do not have to do this, because I know Scott would absolutely hate it.

He is not requiring a lot of oxygen and despite some mildly elevated blood pressure this morning (160s/80s) his vital signs are stable. His heart rate is 84 and he is still on the Amiodarone-the medication that was started on Friday to treat his then increased heart rate/rhythm. It continues to work and his heart rate has been normal since.

His leg actually looked pretty good to me and not very red.

The plan is to get him out of bed at 1:00 this afternoon.

*Note for those that don't know-- I am a Nurse Practitioner and I like knowing the "numbers." Sorry if this was a little boring!

Address

Some have asked where to send cards and well wishes.

I am collecting cards at my home. Please send to:

April Greener
1321 Harvard Avenue
SLC, Utah 84105

I live about 10 minutes away from the hospital and will be going there everyday. I am plastering Scott's wall with all the notes he has receivced. I have one wall almost filled and would love to get the rest of them filled up! Scott loves to see the cards and have them read to him.

Thank You!

May 23, 2011-Third surgery report

Scott had a really good night last night. He slept well.

He went into his third surgery this morning at 7:30. At 9:20 the surgeon came to talk to us. He said that overall Scott is doing well. He handled the surgery without any difficulty. He felt like overall the wound looks "clean" but he did have two concerns.

The first concern was that Scott's wound/leg looked a little red. The Doctor thought this may be a reaction to the antibiotics or infection. Because of the possibility of it being infection, he extended an incision higher into Scott's thigh to ensure that he didn't see infected tissue. After doing that he did not believe there was any more infection in his leg.

Please pray that Scott does not have any more infection in his leg and the redness resolves.

The second concern was that Scott's WBC (White Blood Cells) was elevated yesterday. The doctor did not know what his results from today were, yet. I haven't been in the room yet to ask his nurse, either. :) An increased WBC can mean there is still some lingering infection or it could be related to the multiple surgeries/healing process. Again, we hope and pray that it is the later.

Despite all this, the doctor still felt like Wednesday could be the day when Scott had his fourth (and hopefully final) surgery. This will be another "big" surgery where they will finish the amputation and start the process of closing his wound. He needs to be infection free for this to be able to happen.

Scott is back in his room after his surgery, but we haven't been able to see him yet. I'll update again soon.

LIfe Outside the ICU Doors

Strangers; yet we are all connected through one terrible word. Tragedy. It's not unusual to see someone crying, overhear a tense conversation, or look at someones face and see suffering. You recognize the look because you feel it too. Some speak a different language but it doesn't matter, you understand each other perfectly.

All of us wait outside those exclusive doors knowing that someone we love is hurting. Someone we love is walking that delicate line between life and death. A bond built on empathy and understanding is made. You're probably the only person who really gets what the other person is going through because you are walking a similar path. You can't help but pour your story out to someone there because they want to do the same. They want to talk about the person they love and so do you.

We are all weary, yet maintain our constant vigil outside those doors; cringing when the staff come out and call your last name. The last time that happened to us, it wasn't good news. It seems like it never is.

We are all battling some kind of war, aren't we? If I have learned one thing from this it has been to never look at another person without considering what they have been through. How easy it is to judge sometimes, how terrible it is that we do it.

Scott is my brother, his situation is so unfair. It's just not right for someone to suffer like he has. I think of the road he has ahead, not only with this current problem, but the next hill, his journey to get a new liver and I just want to scream. I want to pound my fists and ask why he has to go through this. Why do his children have to carry this burden when they should be worried about catching the bus on time? Why do my parents have to face every parent's worse nightmare-the awful possibility of outliving their child?

We're not alone though.

Just today a 36 year old wife and mother passed after having a heart attack. She was traveling with her 16 year old daughter and her husband to California when her symptoms started. How do I know? Because we were feet away from her grieving family, while praying for them and our own loved one.

The parents of a 22 year old son, have been our constant companions in the waiting room. Their son fell from a barn two days ago and has a massive head injury. They live in Randolph.

Another family in the ICU waiting room prays for their young grandson who was in a car accident and hasn't woke up yet.

There are so many more. We all walk around experiencing the same kind of sorrow, worry, and heartache. We talk but words aren't really needed.

It's a difficult place to be outside those ICU doors. It feels insensitive to others to feel joy when your loved one has a good day. You feel their pain when something bad happens to them, because you know it could have been you. You feel badly because you are grateful that it wasn't you.

"Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost." Romans 15:13

"But they that *hope* upon the Lord shall renew their strength; they shall mount up with wings as eagles, they shall run, and not be weary; and they shall walk and not faint." Isaiah 40:31

**In the above scripture the *word* is wait. According to the Bible dictionary, wait means hope. I took the liberty of replacing "wait" with hope.

A Great Day!

This is Scott, after I asked him to smile. :)

Scott has continued to have a good day. His vital signs are stable and he has been more alert today. He sat up in the chair tonight for a second time, with the help of a special chair. The chair laid parallel to his bed and a special sheet was put under him. Scott (with lots of helpers) slid over to the bed/chair which was then raised to a sitting position. The nurse was worried that if he stood again, they wouldn't be able to get him back in bed. The chair worked really well and Scott did great in it.

Sitting up in the chair meant he could eat again. Yeah! He had some Jello and some more frozen "dessert."

More good news...his night labs came back even better than his morning results. His Creatinine, which was elevated this morning, was 1.02 tonight-normal! An elevated Creatinine indicates that his kidneys weren't functioning like they should, but now the result is normal!

His sodium which has been low for awhile now, was 135 today! Normal is 135-145! Yeah! He still isn't having much output, but his labs indicate that his kidney function is starting to improve! Thank you for prayers, they are working!

The culture on his leg came back positive with Klebsiella Pneumoniae--the nasty bacteria that caused this infection. It was found in his blood and in his leg. The antibiotic(s) he has been on were the right antibiotics and should kill any remaining bacteria.

Scott was switched from IV pain medications today to oral pain medications. The nurse felt like these would work a little bit better for Scott and from how he has acted today, it seems like they are.

He is still on a fluid restriction, but by the end of the day the nurse had measured out his remaining fluid allotment in a bottle and left Scott in charge of it. He could see how much he could still have and was "in charge" of how much (at least until the bottle is empty...) and how often he had some. I think this is really helping Scott, to have some control, over his seemingly unquenchable thirst. He will however be NPO (can't have anything by mouth) at midnight tonight in preparation of his third surgery tomorrow morning at 8am. We hope, hope, hope he can wake up easily after his surgery tomorrow and be allowed some fluids. With his third intubation (breathing tube down the throat, while he is asleep in the surgery), and very limited oral intake, I can only imagine how sore his throat must be.

Scott and I had this conversation tonight:

April: "Scott, are you sad about your leg?"
Scott: "No. If that is what they needed to do, so be it"

He seems to have a peace about it that I am still searching for.

Only one small thing the other direction...Scott did have one small blister on his back today from laying in bed. It is small and non-worrisome at this point but they will be watching this closely. We hope that now that he is able to get out of bed, this will not be a problem.

I hung the new pictures and cards on Scott's wall today and almost one wall is full! It looks great and Scott does enjoy looking at them and having us read them to him. Keep them coming! I want every gray space filled up!

Please pray that Scott's surgery tomorrow will go well.

Pray that he can wake up easily after surgery and be allowed and be able to tolerate some fluids.

Please pray for Janiece, Shaunie, Shelby, Shaylie, and Mick. That they can have the energy to continue this exhausting "life". Please pray for peace and strength for them.

We love you all and are so grateful for this really good day. It has given us much hope.

XOXO,

April

May 22, 2011

Scott had a better night last night and a pretty good morning thus far. His heart rate has been 80-90, which is wonderful and much improved. He is still on fluid restriction because his (IV) input continues to exceed his output. He can not have more than 500ml, roughly 16 ounces-a small water bottle of fluids today. Of course, he wants so much more. He was put on a diuretic, Lasix, to try and rid his body of the extra fluid. This medication also causes him to feel extremely thirsty. His lungs are still clear which is very reassuring.

His lab results were pretty much the same today. Platelets still low and sodium still a bit low. There was one concerning value though, his albumin was low today, which is a new concern. This can be a result of his liver impairment or a sign of malnutrition, which they believe is the more likely causes. The healthcare team has discussed inserting a feeding tube, in Scott's nose, down his throat, and into his stomach to get him the nutrition he needs to get well. This hasn't happened yet, so we will see what the day brings.

Janiece asked the nurse why he wouldn't be allowed to try and eat orally to get the nutrition he needs and basically she said it would be impossible for Scott to consume enough of the right calories he needs. He just isn't well enough for that, yet.

He also needed to have a swallow study to before he was allowed to drink. They needed to make sure that he had a gag reflex (sometimes this is slow to "wake up" after surgery and after being very ill) and that he would be able to drink without aspirating (choking). He did well for the swallow study. His bed does not allow him to sit all the way up so the results were that he can have a little bit of water/ice chips (less damaging if he were to aspirate) while he is sitting up as far as he can in bed and he can have other fluids (apple juice, jello etc) when he is sitting up in the chair.

The physical therapist came in again today to try and get Scott out of bed and into a chair. He tried this yesterday but only made it to sitting up at the bedside. Imagine yourself terribly sick, no oral food or drink for four days now, pain from surgery, and standing and moving yourself to a chair with only one leg. Scott's not exactly a small guy either...

It wasn't easy and about midway Scott, absolutely exhausted wanted to sit back on the bed. With some encouraging words, he pushed through and made it!

The nurse, physical therapists, Janiece, and I burst into applause. Janiece and I cried. It was a momentous moment and I am so happy I was able to be a part of it.

After Scott sat down he said "Ahh, that feels so good!"

As a reward he was given a small amount of Jello, a frozen orange "dessert", and a Popsicle. This was the greatest reward he could have been given. He savored his "treats" and looked so good.

He is back in bed now and resting. He will have his third surgery to clean his wound again tomorrow morning. I'll update again at the end of the day.

"I'll get by with a little help from my friends"

We are completely overwhelmed with the love and support each of you have shown to our family during this difficult time. Our family has always known what a wonderful community we live in. The examples are far to many to recount here but here are a few:


When Scott was transferred to IMC, our Shelby was playing softball in St. George. Wanting to spare her some worry, the decision was made to let her play her game and wait until we had more information on Scott's condition. When the decision was made to amputate Scott's leg, Janiece called Kirk and Stephanie Oyler to head North while Aunt Melissa, Eric, and Doug headed South. They would meet in Nephi. With no questions asked and not even knowing the circumstances, they jumped in the car to bring our Shelby home.

Then the BR ladies softball team flipped their already made posters around to write on the back "We Love the Newman Family" and "We're doing this for Scott." Their team took State two days later.







Wes Shaffer wrote on facebook "Tell Scott I'm whittling him a new leg with some extra ass kickin features." A day later he came to the hospital with his homemade prosthetic. The phrase on the top of the foot reads "Platinum Prosthetics. If you can't lend a hand, give them a foot." Everyone was in stitches.




Scott's new prosthetic--If you don't laugh, you'll cry.

The Coombs family got a trailer down here so Janiece and family could stay close to the hospital.

The Roberts family filled Janiece's "home away from home" with plenty of groceries, snacks, and homemade goodies. Shauna Coombs sent a basket full of goodies. We have never eaten so well! We are so grateful.

No one has been home yet, but we have heard that both Scott and Janiece's and Doug and Tamera's yards look beautiful.





The Clair Zollinger family gave money to help cover some of the expenses that come from living away from home.



The ICU isn't a fun place for kiddos; my sweet husband has been the designated babysitter, even taking all "his charges" to the School Art Fair, Friday night.



Again, there are so many more. The waiting room has been full of friends and family. Flowers have been sent, the cards are piling up and they bring Scott so much joy. We feel your prayers. Please know how much we appreciate you. We are so grateful and are buoyed up everyday by your
kindness. Words can not express our gratitude. Thank you so much.