"Could of, Should of, Would of.... It doesn't matter I am HERE NOW and from here we will move FORWARD!!" Scott Newman

Tuesday, June 26, 2012
Hope not lost!
Where to begin?
Scott received two units of blood today. This blood has literally seeped life into Scott. He had more energy. He was awake. He was less confused. He got out of bed and helped transfer himself. It has been AMAZING to have more of the Scott we know and love today.
Dr. A the transplant surgeon came and spoke to us today she had good news and bad news.
A summary--
Again, we heard that Scott would be a high risk patient for a liver transplant. One risk factor is Scott's size. Dr. A stated that she has done transplants on patients larger than Scott and obviously patient's smaller than Scott. She stated that Scott's abdomen is full of fluids (ascites--a common condition with patient's who have liver problems). Because of the fluid build up, she felt like there was not going to be a lot of room for her to transplant a "large" liver and that he would likely require a small liver (opposite of what, you would think). She said that this fluid, will not be easy to get rid of because his tissues etc act as a sponge and you can't just "drain it out" easily.
We didn't ask what this would mean for Scott in the long run or if it makes any difference, to have a "small liver" versus a "big liver" in a big body.
However, Dr. A stated that she thought SCOTT COULD BE LISTED FOR A LIVER TRANSPLANT!!! She is going to talk to the other physicians and Scott may be on the transplant list "at the top" within the next week. Of course, we have no idea when a liver could be available for Scott, but Dr. A stated that it usually happens within 6-12 weeks.
The bad news. Scott is now in Kidney Failure. His sodium is still low, his potassium still high, and the labs that monitor his kidney function are much too high. The conservative therapies (IV and oral medications, time) that are being used currently are not correcting this the way it needs to be corrected. A kidney specialist came in and spoke with Scott and Janiece and discussed that Scott would be given three days of this continued conservative therapies to see if his Kidneys would start going again. If they do not respond, Scott will likely be started on dialysis. This was a huge shock to me and I'm really nervous about this.
If dialysis is started, Scott's kidney function could improve with time and he could come off the dialysis in a few days, or it may take a few weeks, or a few months. Nobody knows.
The transplant surgeon Dr. A discussed this problem with us and stated that Scott may need a kidney transplant at the same time he gets a liver transplant. If his kidneys are okay by the time he is able to get a transplant then maybe just getting the transplant will help correct his kidney function. Another possibility is that Scott receives a liver transplant and then "6 months down the road, he may need a kidney transplant" She stated that liver and kidney issues sometimes run hand in hand. Typing this out is confusing....hope it makes sense.
Another little bump in the road, is that Scott's stump is red and warm. We are terrified that he may have an infection again. The on call physician came and looked and Scott's leg tonight and started him on IV antibiotics. Scott currently does not have a fever. Please pray that this will clear up quickly and not delay proceding with transplant. The antibiotics can also be hard on Scott's kidneys, which is worrisome.
We have a long road ahead of us, but we are grateful that there is a road, a chance, a path-- we can travel to help Scott.
Feeling blessed and overwhelmed,
April
A New Day
Some of the medications Scott is on--to rid his body of the excess potassium, and to also help his failing liver filter out the bad stuff, have some, less than pleasant, "side effects" that can keep a person and his helpers up at night. It was a long night--- at least I thought so. Although, this morning, Shelby said Scott had "slept pretty good." Again, I don't know how Janiece has been doing this night after night. It's exhausting.
This morning Scott's Sodium level was 108 (it was 107, yesterday. We want this to go up--around 120 would be a great improvement). His potassium was 5.8 (down from 6.2 yesterday--we want this to go down, to below 5.0). Not a huge improvement, but I think more time is needed to see the changes we are hoping for.
His blood pressure continues to be very low 90/20's (diastolic in the 20's causes me some anxiety. It's not good. Yikes!) Because of this and some of his other lab levels, Scott is receiving a blood transfusion right now.
Scott was fairly alert this morning, but he is back to sleeping now.
We haven't spoken to any of the doctors, yet. The next update, I hope will be their recommendation. Pins and needles...
A few funnies (if we don't laugh, we'll cry)
About the only thing Scott wants to eat is popsicles. Usually his request is for rootbeer or banana popsicles. Since we have been in the hospital he has only asked for GRAPE popsicles. We have no idea where this new fondness for grape has come from, but...grape it is.
Scott talks A LOT in his sleep. Cows, horses, chores etc are just a little bit of what he said to us during the night--all while being 100% asleep. Last night, everytime anyone came into the room, or when Shelby and I would stir. Scott would ask for a popsicle. At first, we granted his request, but he would literally take one small bite of it and then immediately go back to sleep.
He continued to ask, at every noise, and Shelby and I started telling him, that he would get one in the morning, that it was late, time to sleep etc. He accepted this, and again would literally fall back to sleep 1.2 seconds after asking for the popsicle.
Around 4 this morning, Scott kept bumping the arm rail with the nurse call button on it. Each time the staff would ask over the intercom if we needed something. Each time, I would say sorry we bumped it, sorry it was an accident... Finally on the 4th or 5th time the CNA came into check on us to make sure we were okay.
Scott whispered to the aide "it wasn't an accident, can you get me a popsicle?"
Shelby and I, in our half sleep deprived delirious state-both busted out laughing. Scott was trying to whisper his request, so we wouldn't hear and talk him out of it. Just like before though, 1.2 seconds later he was snoring again, his request forgotten. Popsicle melting.
Apparently, he is listening, and apparently he's a little more awake than we think!
I'll update when there is more to update about.
April
Monday, June 25, 2012
Words Fail Me
I talked to Janiece today, and told her that last week, for the first time, I allowed myself to grieve for my brother. I grieve for the unfairness of it all. For his sweet children who have been forced to grow up too fast. For the burdens they shouldn't have to worry about. For Janiece (who is a saint by the way), whom I'm sure as a young bride, never envisioned this. For Scott's youth. For all he is "missing out on". For his suffering. For my parents having to witness it all--Scott will always be their baby and you never want this for your child. For the guilt I feel, for not being a better sister. I grieve.
Because we live 81.2 :) miles away from Scott, it's been easy for me to distance myself from the worry and the sadness. I told Janiece I've felt a little "disconnected" from what's been happening to Scott-only because I've chosen to be. Sometimes reality, feels like too much to bear.
But the reality is that Scott has not been doing well for quite awhile now. He has been spending most of his time in bed. Over the last little while not only has he been in bed the majority of time, but he has spent very little time being awake. Even when he is "awake", it is for moments only and most moments are laced with confusion.
He essentially is out of bed to use the bathroom and then back to bed. Scott is so weak that transfering is getting harder and harder. He can barely stand-he just doesn't have the strength. I don't know how Janiece and the kids have been doing it.
He has been plagued with pain-abdominal pain, terrible muscle spasms/cramps, and pain in his amputated leg. He's been depressed. He's been suffering and it doesn't seem like there is much anyone can do to relieve this.
Today he had an appointement at 1:00 with the transplant physicians here at IMC. I had planned to attend the appointment and meet Janiece and my Mom there. I was anxious and for once in my life left my home in SLC very early and arrived at IMC around 12:40. On the other end, Janiece, our Mom, and Shelby had left a little late because they could not get Scott into the truck. Our Dad ended up coming to help get him in the truck and realizing that we would likely need his help to get Scott into his appointment today, came to help out.
Janiece and Co. made it to the 2100 South exit in SLC, when they had truck trouble. Of course, because I had left early, I was already at the hospital. I quickly headed back to help them. To make a long story short, there was no way we were going to make it to the 1:00 appointment. Janiece called to let them know we were going to be late. Dad worked on getting the truck going again.
A little while later, IMC called and said they would need to reschedule Scott. We were devastated. Janiece pleaded, and thank God, they had mercy on us. Dad got the truck going again and we speed away. We got to IMC at 1:55.
It was highly stressful, but in reality, the tender mercies were there. The fact that our Dad ended up coming last minute--I don't think we could have handled the truck issues without him. The fact that I had arranged to come to his appointment and was close by. Janiece was able to pull into a shaded area while they waited for me--on this 100 degree day, I think this is a great blessing. The truck started, IMC agreed to see Scott still, and we made it here.
The Physician Assistant met with Scott, Janiece, Shelby, and I. He looked over Scott's labwork he had done on June 20. He had made the decision prior to us getting here that Scott needed to be admitted to the hospital in his words for a "tune up"
So, here we are at IMC, in a place we've spent too much time at before, yet desperately want to spend more time here if it means Scott can get a liver and another chance at life.
Scott's lab work is terrible. For my personal record--here are the numbers
Sodium 107--very low
Potassium 6.2--very high
Platlets 58--Low
Hematocrit 22.1 Low
Bun 78--High
Creatinine 4.08 High
Liver Enzymes
ALKP--140--High
AST--153 High
ALT-- 105 High
Bilirubin-- 3.0 High
Scott's blood pressure at the clinic today was 77/30, 79/42. His blood pressure since we have been admitted has ben 90/28, and most recently 91/36. Much too low.
Sorry, I don't have the energy to explain well, but essentially his Kidneys aren't working well, he is greatly dehydrated, and of course, as we all know, his liver is kaput.
The plan is uncertain right now. So far, they are just working on stabalizing some of his blood levels.
Tomorrow, Scott will meet in greater depth with the Transplant surgeons and discuss the possibility of transplant. A few sentences that stuck out to me today from the Doctor who stopped by earlier tonight
Paraphrasing--
"We've got to make a decision for transplant or not, soon"
"We try to help everyone-and we especially want to help you-you're a young guy, with a young family, and I would sure like to see you get a liver"
"Unfortunately, there are never enough livers available, as there are people who need them"
"Scott is a high risk patient for transplant"
"Time is limited and Scott can not live long without a liver"
It's not easy to write and it certainly wasn't easy to hear. We are at a stand still, waiting, hoping, and praying.
We are desperate that tomorrow bring positive news and hope is not lost. It's terrible to know that what we pray for will bring another family sorrow, its bittersweet to say the least. We hope though, for Scott.
Please, at this time, No visitors.
"But I will hope contiually, and praise You, yet even more." Psalms 71:14
Much Love,
April
Sunday, September 18, 2011
Not Abandoned
I would be remiss, if I did not thank all of you for the support you showed to Scott and our family at the blood drive. We kept the American Red Cross busy from start to finish. There were so many walk ins and people who had signed up that we actually had to turn people away at the end. In total 84 units of blood were donated. The Red Cross organizer spoke to me personally and said that "they had never seen a blood drive like this-with so many people"
I must admit that as I was organizing the blood drive, I allowed fear to sneak in. Thoughts of "no one coming" etc, filled my mind. I don't know why I even worried, it was a huge success due to selfless people like YOU! Thank you.
Now for an update on Scott...
Over labor day weekend, Scott's amputated leg started looking red and we were all concerned infection was setting in again. Mind you, they had just stopped the "round the clock" antibiotics two weeks prior and pulled out his PICC line (long term IV). He was seen at the BRVH and IV antiobiotics were administered. A few days later Scott was seen at IMC and gratefully, they felt like everything was okay and that he just needed some oral antibiotics. This roller coaster ride is a doozy.
Most recently Scott has been back to work and I know this has really lifted his spirits. He loves to be out and about and around people. I hope I am not being too bold by sharing my gratitude to Scott's employer Greenline. They have gone above and beyond in helping Scott and his family. They have made accommodations and welcomed him back. They fill a void, that we (his family) can not. We are all so grateful.
A story:
A few weeks ago, I went to Tremonton to celebrate my Nephew's birthday. A few minutes after pulling in, Scott's girls' Shaunie and Shelby pulled in. They immediately set to work getting Scott's wheelchair out of the truck, setting it up, getting pillows etc ready for Scott to get out of the truck. I looked at those girls, my sweet nieces, whom I used to babysit, with deep admiration. They who were once so tiny are now grown and their roles a bit reversed and my heart burst with pride, and honestly some sadness.
For those of you who know Scott and his family personally, you know how wonderful his children are. They are kind, responsible, hard working, and all things good. For that, I am so proud. My sadness came because throughout all of this, I fear some things have been taken from them. Already at such a young age, they have taken on the role of caretaker.
In this "new" life, getting wheelchairs out have replaced jumping out of the car and running into the party, IV antibiotics replaced the places in the fridge, where milk used to go, having Dad help them at the fair has changed to them helping Dad get to the fair. They've gone through the emotions and thoughts of possibly losing their Dad. That changes you. It's not bad but sometimes it doesn't seem fair.
More change:
Back in 2009, before Scott was diagnosed with liver failure, before any thoughts of what the last few months would hold, before our Grandma (my Mom's mom) started showing signs of dementia and requiring around the clock care (provided by her children).
My Mom and I booked a "once in a lifetime" trip to Israel, Greece, Turkey and Egypt (unfortunately Egypt has since been removed from our tour). We leave next week. Over the months, I have had to talk my Mom, back into going more times than I can count. Now instead of worrying about what to pack, My Mom is worried about her mother, her son. Now, going to a place without cell service seems unwise. We will go and I pray that when we return all will be well.
Most Importantly:
"Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the Lord your God is with you wherever you go" Joshua 1:9
Wednesday, August 3, 2011
Blood drive this Friday! Sign up!
If you're not already registered-it's not to late! The above picture could be you!
See the happy smiling faces on both participants? The participant is enjoying his experience-there are no signs of pain! The soft squishy bananna-esqe type chair? So comfortable-you really must come try it! The relaxing clean, white environment? I know you want to! :)
Available appointments:
2 at 3:45
1 at 4:15
1 at 4:30
1 at 4:45
1 at 5:30
1 at 6:45
Of course it is best to make an appointment, but we can accommodate some walk ins---you just might have to wait a bit. I need to let the Red Cross coordinator know tomorrow how many we have registered so he can bring the appropriate amount of people/supplies. If we get more people we can open up more time slots. So please (imagine me begging-it's not to difficult! ha!) let me know asap if you can donate.
Again, you can leave a comment here on the blog
you can email me at amgreener1214@hotmail.com
or message me on facebook (April Greener)
You can also call my Mom at 1-435-854-3854 and register through her.
Held at Tremonton West Stake Center
This Friday August 5th
2pm-7pm
We will be calling everyone who has registered tomorrow with a reminder call of their appointment time.
To answer a question I have been asked..Anyone over 17 years can donate without parental permission. Teens aged 16 can donate with a parent permission slip.
Today my Mom, took a phone call from a woman who just moved here from Pennsylvania. She saw the announcement in the Leader today (did you?) and called to volunteer to donate. She doesn't know Scott or anyone in our family. She said that she usually donates every 8 weeks (as often as you can) and was disappointed when she moved here that there was not a local place she could routinely donate at. Can you imagine how many people she has helped? All I can say, is Thank you and I would love my life to emulate hers.
"As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them." --JFK
Tuesday, August 2, 2011
Update on available appointments!
As of right now, we ahve 54 donors. Thank you!!!!
Here is an update on available appointment times
1 appointment at 3:30
2 appointments at 3:45
1 at 4:15
1 at 4:30
1 at 4:45
2 at 5:30
1 at 5:45
1 at 6:15
1 at 6:45
Obviously the available slots don't equal 100...Our first (secretive ;) goal) is 65 donors. If we get enough interest the red cross can send more staff and we can open up more slots. I just need to let them know 24 hours in advance-so please register and let us know if you are availabe to donate blood!
See below posts for specific details about where, when, and how to register!
So excited...thank you all so much
Monday, August 1, 2011
Available appointments for blood drive
As of right now, I have 45 people signed up to donate blood! THANK YOU!
Here is a quick update of the still available appointments:
2 appointments at 3:30
2 at 3:45
1 at 4:00
1 at 4:15
1 at 4:30
1 at 5:15
3 at 5:30
3 at 5:45
3 at 6:15
2 at 6:45
If none of these times work for you, we can accomodate you at another time--just let me know and I will try to arrange the schedule.
Again to register you can click on the link (two posts down). However, I have heard from a handfull of people that the link hasn't worked for them...??
Another (easier :) way is to email me at amgreener1214@hotmail.com with your name, phone number, and the time you would like.
Message me on facebook
Or leave a comment here on the blog
You can also call my Mom at 1-435-854-3854 and she register you over the phone.
I need to let the Red Cross know how many donors by early Thursday morning so they can plan staff/supplies etc. So please register as soon as you can.
Thank you! Thank you! Thank you!