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