Our Lazarus Moment

I can't believe the difference three days have made.  Scott is soooo much better then when he was admitted on Monday.  I have to admit, that on Monday and Tuesday I truly thought that our time with Scott was extremely limited.  It's amazing the difference four units of blood and restoring his electrolytes to a more normal level has made for Scott.  He is a different person than he was on Monday.  I feel we witnessed a "Lazarus Moment"

The kidney specialist has been amazed at the progress Scott's kidneys have made over the last two days.  His levels are slowly returning to a "normal" level for him.  He wants to keep an eye on him for the next few days and not bring them back up to "normal" too fast.  Bringing them up too fast can also be hard for Scott's body to adjust to.  Slow and steady...

A comparison:

Sodium: (normal is 135-145, normal for Scott would be above 120)
Monday 107
Today 121

Potassium:  (normal is 3.5-5.0)
Monday 6.2
Today 4.4

Kidney function labs
Creatinine
Monday 4.08 (way too high)
Today 1.31 (still high, but getting closer to normal)

Scott is feeling better, is awake more, is rarely confused now, has more energy, is transfering in and out of bed now with little assist, and it is truly, truly miraculous.

As I mentioned early, on Tuesday Scott has some redness and warmth to his stump.  That evening he had a low grade fever.  IV antibiotics were started and since that time his leg has improved and he has not had a fever however they are concerned about a possible infection.  A CT scan was completed today on his stump and Scott had a fairly large collection of fluid.  This could be an infection, which is not what we want.  For now, they are watching and continuing the antibiotics.  He may requre his stump to be "opened up" for further evaluation.  I'm really hoping Scott can avoid this.

If Scott does have an infection and as long as he is on antibiotics (any antibiotics for any reason, for that matter) he has to be put on "hold" for a liver transplant.  He is not removed from the list, per say, but he would not be eligible for a liver during that time, even if a possible liver became available. In the past, Scott has had a very difficult time recovering from infections and has sometimes been on antibiotics for an extended period of time.  That's time we would rather have spent as an eligible candidate for a liver.  Please pray that Scott's leg can improve and that there is no infection.

A little more about Scott's liver. Starting two years ago when Scott was initially told he needed a liver transplant they began to monitor his MELD score (Model for end stage liver disease).  This is a calculation of lab values (bilirubin levels, creatinine (kidney function), and INR (blood clotting level)  that give us an idea how "sick" Scott's liver is. The MELD score can influence when and where on the transplant list patients are listed at. 

Two years ago, Scott's MELD score was usually around 17-19.  Certainly a sick liver, but not "sick enough" to be listed for a transplant.  (in the transplant world, you have to be pretty darn sick, to be listed).  We were told at our first consult with the transplant team that most patient are listed when their MELD score is around 25.  On Monday when Scott was admitted, his MELD score was 32. A score of 32 indicated he needed a liver quickly and would have been towards the "top" of the transplant list.

As his lab levels have returned to a more normal level over the past two days, his MELD score has improved.  His MELD score today is 25.  A score of 25 would put Scott in the "middle" of the transplant list.

I speak loosely about the "top, "middle" etc of the transplant list because it's not clear cut like that.  It doesn't matter if Scott is technically at the "top" of the list (he would need to be very sick for this to happen, like on Monday), he still has to have a donor that is a good "match" for him.  Donor livers may be available, but if they do not seem to be a good match for Scott (size, blood type etc) then they would obviously go to the next candidate who was a match, regardless of Scott being at the top. 

Obviously as Scott's MELD score changes--which it WILL (improves, worsens).  This will also change where he sits on the list.  Estimated time for patients at the "top of the list" for liver transplant is 6-12 weeks.  If your sitting in the middle it could take up to one year.  But we've been told that, Scott will and essentially it seems like he "has to" get worse, before he can have a good chance of getting a liver transplant.

The transplant physician said yesterday that out of all the patients that need a liver, roughly 3 out of 10 actually get to be listed for a transplant (again it's not easy to "make the list" in the first place and so many factors go into establishing if a patient is a candidate for liver transplant or not.  Scott has two things going for him to be listed--his young age and the fact that his liver failure was due to a genetic disease (Alpha One Anti Trypsin Deficiency) and not self inflicted (drinking, etc).

Out of those three patients that are listed on the transplant list 1 out of 3 will receive a liver.  Last year IMC did 27 liver transplants.

So as you can see, the road is going to be long and bumpy and it's not easy at all to "just get Scott a new liver" like we all want.  People are living longer and things that used to cause fatal injuries just don't as much anymore--like the transplant case worker said.  Car accidents that used to be fatal, people are now surviving.  Cars are safer, people are more aware with seat belts, medicine and the life saving capabilities have greatly improved.  All of these are absolutely amazing, wonderful, improvements for all of us, but in the donor world it means less donors while the amount of patients needing a liver doesn't decline at all.

I feel a litte crass talking about this like that because it truly breaks my heart to think about it in depth.  Someone will die, to save my brother.  I absolutely want my brother to live and there is no other way he can at this point without a liver transplant.  It's a hard thing to pray for-- that Scott will get a liver because it means someone else's life will end and some other family will be devastated.  That grief and sadness and loss of TIME we are so desperately trying to avoid, is what will happen to another family.   I have prayed that there is some family out there that will consider organ donation and that my brother could be the recipient. Then I feel awful about it. Again, it's bittersweet.

Part of me likes to think about Scott and his donor having a relationship before this earth.  That they knew each other, had this connection, and this person knew he would give the ultimate gift to my brother.  It's a nice thought. 

Jesus looked at them and said, "With man this is impossible, but with God all things are possible" Matthew 19:26

TIME

Recently my husband and I celebrated our 13th wedding anniversary by attending the Temple. There we  participated in the sealing ordinance.  Our temple worker encouraged us to ask questions and truly wanted us to learn.  A question was asked why the ordinances for the deceased say both TIME and eternity?  Shouldn't it just be eternity?

As we discussed this, I thought to my self  "Oh, geez the pressures of time follow us--everywhere.  Even there"

You see, much of that night, had already been dictated by time.  I couldn't believe it had been 13 years.  My husband and I were babies when we were married and I'm only a few years shy of the mark of spending more TIME with my husband then we have apart.   Where has that TIME gone?

That night, my husband arrived home late from work.  He had gotten busy at the last minute and TIME had gotten away from him.  We rushed to the restaurant and became frustrated with the traffic----it was wasting our TIME.

We dined at "The Roof" An absolutely beautiful building that overlooks the Salt Lake Valley.  On our way to our seat, we passed a live pianist playing music for our enjoyment.  And you know what?  I was so worried about our lost TIME, that I can't really remember taking the TIME to enjoy what I was surrounded by.

We rushed to the temple, hopeful that we could make it to the last ordinance that started at 8pm.  We certainly didn't think we would have enough TIME to make it.  Luckily, we did, and after an hour or so, our ordinance worker asked us all if we had TIME to finish the few names we had left.  Of course, I wanted to stay, but I was also worried about the TIME-how long we had been gone from our children, how late it was getting.  Time, time, time.


Just like all of you, my life feels full and busy and always, like I never have quite enough TIME.


I've spent a lot of years in school, which took a lot of TIME to complete and a lot of my TIME everyday while I was doing it.  My family got less and less of me as my comittments took up the majority of my TIME. I always did it with the intent that "when I was done, I would have more time", "the job, I would be able to get, would allow me more flexible hours, more TIME",  "the hours I would be required to work, would be better time wise for my children"  I'm forever grateful that I did it, and our lives our better because of the sacrifice of TIME, I made.  But you know what? Life feels just as busy, just as full, and TIME continues to allude me.

Tonight, I came home from the hospital and didn't feel like I had enough TIME to help out with my son's scout activity tonight.  I ended up going and it went 30 minutes over the usual TIME and I was annoyed by that.  I came home feeling rushed again and when my daughter asked if I could read her three books instead of two, I felt like I didn't have enough TIME and that it was too far past her bedTIME.

As Scott lays in the hospital, so many of our questions have and continue to revolve around TIME.

When will Scott be listed for a liver?

When will Scott be able to actually get a liver?

How long can Scott's current liver continue to give him life?

How long will he be in the hospital this time?

How long will he stay in the hospital after a transplant?

How long will his kidneys continue to function?

What is his life expectancy post liver transplant?

How long?  How much time?  When?  

The problem?

No one knows-----answers vary, statistics can only estimate, and only TIME will tell. 

It's a tricky balance of TIME--Scott has to be very sick to be on the top of the liver transplant list, but no one knows if the perfect match for him will be available during that same TIME.  We can't control the timing. We desperately want a whole lot of QUALITY and QUANTITY of TIME with Scott but it seems like, while we wait, we can't have both.

I spent a lot of TIME with Scott since Monday and particularly today we spent TIME discussing things, you never want to discuss.  Making tough decisions and talking about a possible TIME we hope doesn't happen for years and years. Maybe it's my background, but it was very important to me to do this and I made a goal early today that "Today was the DAY.  This was the TIME.  There was never going to be a better TIME"  We did it and I feel good about it and so very sad about it.

After all, we're only asking for more TIME.

My life revolves around TIME, or more truthfully the perception I have that there never is enough TIME.  In reality though, I'd be painfully ashamed to see the hours and hours I've spent wasting TIME. But after a day like today, and a night filled with troubled thoughts, I can't imagine a day again where I don't have TIME to read my baby three books instead of two or to attend scouts with my boy. I never want to take this TIME, I have for granted.

After all, none of us know, when our TIME on earth will end.

Hope not lost!

Today was a big day, with a lot of information to take in.

Where to begin?

Scott received two units of blood today.  This blood has literally seeped life into Scott.  He had more energy.  He was awake.  He was less confused.  He got out of bed and helped transfer himself. It has been AMAZING to have more of the Scott we know and love today. 

Dr. A the transplant surgeon came and spoke to us today she had good news and bad news. 

A summary--

Again, we heard that Scott would be a high risk patient for a liver transplant.  One risk factor is Scott's size.  Dr. A stated that she has done transplants on patients larger than Scott and obviously patient's smaller than Scott.  She stated that Scott's abdomen is full of fluids (ascites--a common condition with patient's who have liver problems).  Because of the fluid build up, she felt like there was not going to be a lot of room for her to transplant a "large" liver and that he would likely require a small liver (opposite of what, you would think).  She said that this fluid, will not be easy to get rid of because his tissues etc act as a sponge and you can't just "drain it out" easily. 

We didn't ask what this would mean for Scott in the long run or if it makes any difference, to have a "small liver" versus a "big liver" in a big body.

However, Dr. A stated that she thought SCOTT COULD BE LISTED FOR A LIVER TRANSPLANT!!! She is going to talk to the other physicians and Scott may be on the transplant list "at the top" within the next week.  Of course, we have no idea when a liver could be available for Scott, but Dr. A stated that it usually happens within 6-12 weeks. 

The bad news.  Scott is now in Kidney Failure. His sodium is still low, his potassium still high, and the labs that monitor his kidney function are much too high.  The conservative therapies (IV and oral medications, time) that are being used currently are not correcting this the way it needs to be corrected.  A kidney specialist came in and spoke with Scott and Janiece and discussed that Scott would be given three days of this continued conservative therapies to see if his Kidneys would start going again.  If they do not respond, Scott will likely be started on dialysis.  This was a huge shock to me and I'm really nervous about this. 

If dialysis is started, Scott's kidney function could improve with time and he could come off the dialysis in a few days, or it may take a few weeks, or a few months.  Nobody knows. 

The transplant surgeon Dr. A discussed this problem with us and stated that Scott may need a kidney transplant at the same time he gets a liver transplant.  If his kidneys are okay by the time he is able to get a transplant then maybe just getting the transplant will help correct his kidney function. Another possibility is that Scott receives a liver transplant and then "6 months down the road, he may need a kidney transplant" She stated that liver and kidney issues sometimes run hand in hand.  Typing this out is confusing....hope it makes sense.

Another little bump in the road, is that Scott's stump is red and warm.  We are terrified that he may have an infection again.  The on call physician came and looked and Scott's leg tonight and started him on IV antibiotics.  Scott currently does not have a fever.  Please pray that this will clear up quickly and not delay proceding with transplant.  The antibiotics can also be hard on Scott's kidneys, which is worrisome.

We have a long road ahead of us, but we are grateful that there is a road, a chance, a path-- we can travel to help Scott. 

Feeling blessed and overwhelmed,

April

A New Day

Shelby and I had a sleepover at the hospital last night with Scott.  It included ice cream at midnight, too much TLC (crazy couponers--who knew?),  and a lot less sleeping. 

Some of the medications Scott is on--to rid his body of the excess potassium, and to also help his failing liver filter out the bad stuff, have some, less than pleasant, "side effects" that can keep a person and his helpers up at night.  It was a long night--- at least I thought so. Although, this morning, Shelby said Scott had "slept pretty good."  Again, I don't know how Janiece has been doing this night after night.  It's exhausting. 

This morning Scott's Sodium level was 108 (it was 107, yesterday.  We want this to go up--around 120 would be a great improvement).  His potassium was 5.8 (down from 6.2 yesterday--we want this to go down, to below 5.0).  Not a huge improvement, but I think more time is needed to see the changes we are hoping for.

His blood pressure continues to be very low 90/20's (diastolic in the 20's causes me some anxiety. It's not good. Yikes!) Because of this and some of his other lab levels, Scott is receiving a blood transfusion right now. 

Scott was fairly alert this morning, but he is back to sleeping now.

We haven't spoken to any of the doctors, yet.  The next update, I hope will be their recommendation.  Pins and needles...

A few funnies (if we don't laugh, we'll cry)

About the only thing Scott wants to eat is popsicles.  Usually his request is for rootbeer or banana popsicles.  Since we have been in the hospital he has only asked for GRAPE popsicles.  We have no idea where this new fondness for grape has come from, but...grape it is.

Scott talks A LOT in his sleep.  Cows, horses, chores etc are just a little bit of what he said to us during the night--all while being 100% asleep.  Last night, everytime anyone came into the room, or when Shelby and I would stir.  Scott would ask for a popsicle.  At first, we granted his request, but he would literally take one small bite of it and then immediately go back to sleep. 

He continued to ask, at every noise, and Shelby and I started telling him, that he would get one in the morning, that it was late, time to sleep etc.  He accepted this, and again would literally fall back to sleep 1.2 seconds after asking for the popsicle. 

Around 4 this morning, Scott kept bumping the arm rail with the nurse call button on it.  Each time the staff would ask over the intercom if we needed something.  Each time, I would say sorry we bumped it, sorry it was an accident... Finally on the 4th or 5th time the CNA came into check on us to make sure we were okay. 

Scott whispered to the aide "it wasn't an accident, can you get me a popsicle?"

Shelby and I, in our half sleep deprived delirious state-both busted out laughing.  Scott was trying to whisper his request, so we wouldn't hear and talk him out of it. Just like before though, 1.2 seconds later he was snoring again, his request forgotten.  Popsicle melting.  

Apparently, he is listening, and apparently he's a little more awake than we think!

I'll update when there is more to update about. 

April

Words Fail Me

Things haven't been well for awhile now, but everytime I've looked at this blog, or sat down to post something, words have well---failed me.  I'm not sure how to describe what has been going on, mostly because I have been afraid of what the outcome might be. How do I write about it? Even now, I don't know.

I talked to Janiece today, and told her that last week, for the first time, I allowed myself to grieve for my brother.  I grieve for the unfairness of it all.  For his sweet children who have been forced to grow up too fast.  For the burdens they shouldn't have to worry about. For Janiece (who is a saint by the way), whom I'm sure as a young bride, never envisioned this. For Scott's youth.  For all he is "missing out on".  For his suffering. For my parents having to witness it all--Scott will always be their baby and you never want this for your child.  For the guilt I feel, for not being a better sister.  I grieve.

Because we live 81.2  :) miles away from Scott, it's been easy for me to distance myself from the worry and the sadness.  I told Janiece I've felt a little "disconnected" from what's been happening to Scott-only because I've chosen to be.  Sometimes reality, feels like too much to bear.

But the reality is that Scott has not been doing well for quite awhile now.  He has been spending most of his time in bed.  Over the last little while not only has he been in bed the majority of time, but he has spent very little time being awake.  Even when he is "awake", it is for moments only and most moments are laced with confusion.

He essentially is out of bed to use the bathroom and then back to bed.  Scott is so weak that transfering is getting harder and harder.  He can barely stand-he just doesn't have the strength. I don't know how Janiece and the kids have been doing it. 

He has been plagued with pain-abdominal pain, terrible muscle spasms/cramps, and pain in his amputated leg.  He's been depressed. He's been suffering and it doesn't seem like there is much anyone can do to relieve this.

Today he had an appointement at 1:00 with the transplant physicians here at IMC. I had planned to attend the appointment and meet Janiece and my Mom there.  I was anxious and for once in my life left my home in SLC very early and arrived at IMC around 12:40.  On the other end, Janiece, our Mom, and Shelby had left a little late because they could not get Scott into the truck.  Our Dad ended up coming to help get him in the truck and realizing that we would likely need his help to get Scott into his appointment today, came to help out. 

Janiece and Co. made it to the 2100 South exit in SLC, when they had truck trouble.  Of course, because I had left early, I was already at the hospital.  I quickly headed back to help them.  To make a long story short, there was no way we were going to make it to the 1:00 appointment.  Janiece called to let them know we were going to be late. Dad worked on getting the truck going again. 

A little while later, IMC called and said they would need to reschedule Scott.  We were devastated. Janiece pleaded, and thank God, they had mercy on us.  Dad got the truck going again and we speed away.  We got to IMC at 1:55. 

It was highly stressful, but in reality, the tender mercies were there.  The fact that our Dad ended up coming last minute--I don't think we could have handled the truck issues without him.  The fact that I had arranged to come to his appointment and was close by.  Janiece was able to pull into a shaded area while they waited for me--on this 100 degree day, I think this is a great blessing.  The truck started, IMC agreed to see Scott still, and we made it here.

The Physician Assistant met with Scott, Janiece, Shelby, and I. He looked over Scott's labwork he had done on June 20.  He had made the decision prior to us getting here that Scott needed to be admitted to the hospital in his words for a "tune up" 

So, here we are at IMC, in a place we've spent too much time at before, yet desperately want to spend more time here if it means Scott can get a liver and another chance at life.

Scott's lab work is terrible.  For my personal record--here are the numbers

Sodium 107--very low
Potassium 6.2--very high

Platlets 58--Low
Hematocrit 22.1 Low

Bun 78--High
Creatinine 4.08 High

Liver Enzymes
ALKP--140--High
AST--153 High
ALT-- 105 High

Bilirubin-- 3.0 High

Scott's blood pressure at the clinic today was 77/30, 79/42.  His blood pressure since we have been admitted has ben 90/28, and most recently 91/36.  Much too low.

Sorry, I don't have the energy to explain well, but essentially his Kidneys aren't working well, he is greatly dehydrated, and of course, as we all know, his liver is kaput.

The plan is uncertain right now. So far, they are just working on stabalizing some of his blood levels. 

Tomorrow, Scott will meet in greater depth with the Transplant surgeons and discuss the possibility of transplant.  A few sentences that stuck out to me today from the Doctor who stopped by earlier tonight

Paraphrasing--

"We've got to make a decision for transplant or not, soon"

"We try to help everyone-and we especially want to help you-you're a young guy, with a young family, and I would sure like to see you get a liver"

"Unfortunately, there are never enough livers available, as there are people who need them"

"Scott is a high risk patient for transplant"

"Time is limited and Scott can not live long without a liver"

It's not easy to write and it certainly wasn't easy to hear.  We are at a stand still, waiting, hoping, and praying. 

We are desperate that tomorrow bring positive news and hope is not lost.  It's terrible to know that what we pray for will bring another family sorrow, its bittersweet to say the least.  We hope though, for Scott. 


Please, at this time, No visitors. 

"But I will hope contiually, and praise You, yet even more."  Psalms 71:14

Much Love,

April