LiveR Die Charity Concert

Thanks to the generous and thoughtful efforts of our cousin and his friends, a concert has been organized to benefit Clark. Thanks Dustin! Should be a lot of fun! Invite your friends, and tell them to invite their friends. Hope to see you all there.

Saturday, March 6, 2010

8:00pm - 11:00pm

Muse Music

151 North University Ave
Provo, UT VIEW MAP

PERFORMING:
-Nate Baldwin and the Sound
-Double or Nothing
-Ask for the Future
-J.Wride

Admission: $5
Donations welcome.
All proceeds to benefit Clark.

Enjoy a night out with family-friendly
music while supporting Clark.

Info also on Facebook Events - "Liver Die Charity Concert"

Chin Up

Wise words from my mom's favorite spider -

"Chin up!"

Clark still hasn't heard back from Medicaid for approval and much of his treatment plan is waiting on that. So he also doesn't know a time frame for when the BMT will take place.

In the meantime, he's trying to stay as healthy as possible and receives regular transfusions. Many have asked how he's holding up emotionally. I have to say, he NEVER complains! I complain more than he does. It's just the little things and the big things. Frustration and discouragement, long drives, hours in doctor's offices and hospitals, no answers to why or how or what to do now, money or lack there of, and bills which there is no lack of, not much of a social life, and so on and so on. Still, he never complains! I don't know how but he doesn't.

The Day to Day

Clark was discharged from the hospital a week ago Friday. While there, they removed his Pic line. He doesn't even know how long it was in. He just woke up one morning and it was there. It's been since right after the transplant though. They wanted to remove anything that would allow infection to get in easily. Now he has to be poked every time he gives or receives blood, or anything else. He bruises easily and they take a long time to heal so all these extra sticks make for many bruises. Eventually he will have a port put into his chest for the chemo and BMT. Home health visits have been cut back to twice a week, Monday and Thursday. He doesn't have any energy and sleeps most of the days. He also doesn't have any appetite at all. He weighed 125 a couple days ago but is now back to 132. He wakes most mornings with a pretty good head ache that lightens as the day goes on. He spends lots of time on the computer and Xbox. He said he has Skype on most of the time so if you want to give him a call you can either search for his name, or his Skype username is "tuffscarz".Willow also keeps him busy. She loves Hemi and I never know if Hemi is playing along with her or trying to run away. Willow likes to tell Clark stories. She picks up a piece of his mail (and there's a ton of it, mostly bills!) and starts out something like this, "Once upon a time, . . . hopisal . . . some more things he can't understand . . . You like that story Clark?" Then she'll grab the next piece of mail and start in on another story. Today she told him that he can come to storytime with her.

. . . And On and On . . .

Still no definate cause of Clark's symptoms. He was a little dehydrated so he recieved fluids to help with that. They said his liver and everything else are functioning just fine. There is some calcium build up on his liver which is probably causeing the pain. They are not concerned about it as it is common and just part of the transplant process.

Clark felt great all day yesterday and was expected to come home today until he woke up with a fever again this morning. He had a 103 fever but felt like he could not stay warm. They gave him Tylenol, the fever lifted, and he is felling fine again. Unfortunately, because he has these spurts of fever, they will keep him for observation until tomorrow.

They are also talking about taking out his pic line. Origionally they were going to "install" his central line in preparation for the BMT but now they don't want him to have any lines as they are easy access for infection. The pic was easy access for us too though. Now he will have to be stuck everytime they draw blood or administer medicine. This will be hard because that is something I CANNOT DO!

If you would like to visit, Clark is on the 2nd floor in the Intermediate Care ICU. No kids, no visitation from 7-8:30 AM or PM, and no later than 11 PM.

This is the sickness that never ends . . .

Yes it goes on and on my friends . . .
Clark started feelin' it not knowin' what it was . . .
Now he'll continue BEATING it forever just because . . . !

Cue MUTE button!

After a short visit home, Clark is back in the hospital. In and Out! Just like that. I was up getting ready for work when I received a text from him asking me to come downstairs. I knew something was up and rushed down to find him in his bed, face wincing in pain. He said he felt like his body was on fire, yet he was freezing cold, extreme joint pain especially in his ankles, headache, and pain in his liver area. He also felt faint and was pale and almost fainted when he tried to go to the bathroom. He felt fine when he went to bed the night before but symptoms started in around 3AM. I called the transplant coordinator who said he needed to come straight to the ER at the U. Kellen took him up while I went to work. Clark said his discomfort lifted some on the drive up. When they got there, Clark stood to get out of the car while Kellen got a wheelchair. Kellen turned around just in time to see the blank stare on Clark's face and catch him as he went down. The valet helped Kellen lift Clark into the wheelchair and he started to become aware again once inside.

In the ER, they gave him saline and drew blood for testing. The liver team was called in and throughout the day he had several more tests including a CT Scan and an ultrasound. Clark said that all other symptoms had gone away but his "liver area hurt super bad." There was talk of some kind of node on his liver but we are not sure what that means or if it even is. They also said something about infection so he was getting an IV antibiotic drip over the course of three hours because it's so potent it would be harmful if it went in too quickly. We are hoping to have more answers today as results come in.

Clark sent me a text letting me know where he was being admitted to. It said, "2nd floor. Do u know if I have been there?" I laughed and relied, "The SICU is on 2nd floor. Ya you've been there!" Mom responded with, "You lived there!" Clark said he is in the room where he saw bugs and mice. Wonder if they've taken care of that problem yet!

Nurse Kristin

Ha, that'll be the day. Everyone keeps saying I should go to nursing school with everything that I do here with Clark. I think they mean I SHOULD go to nursing school because I have no idea what I'm doing! I can't believe some of the things they allow me to do. I really don't do that much but with the training I've had - NONE - it sometimes gets a little scary for me and Clark.

Clark is on two different IV antibiotics right now. One is for the CMV and the other is for the organism in his urine. He receives one twice a day and the other three times a day so he is on IV 8 hours out of the day. One of them is pretty harsh and gives him pain in his shoulder as it goes in, his eyes sting and get blurry, and it has killed his appetite. Someone made a lot of money by inventing a way to administer IVs at home. It is premeasured in a little bulb that I hook up to his pick line and it goes in on it's own. I don't know how he does it but Clark has figured out how to do it himself if needed. He was coming home from infusion one day when it was time to hook up. He pulled off into a Taco Bell parking lot and started "shooting up." He said he got a lot of weird looks from passer-bys and was just waiting for the cops to show up.

I have always had a paranoia of getting air in the veins. I think it started when I would watch my dad give shots and asked him why he has to flick the syringe and squirt some out the top. He must have answered something like "if you get even one air bubble in your veins you will die!" That stuck with me and I think about it every time I get a shot or when I would donate plasma. I'm not afraid of needles but I'm afraid of air! Clark has a pick line in his arm to draw and administer from so he doesn't have to get poked every time. Even in the hospitals there are only certain people who can use Clark's pick line so when I found out that I was going to be using it at home I was a little intimidated. It's really easy but then there's the air. I was aspirating the heparin from his line one night and when I drew back on the syringe, nothing came. Clark looked down and said, "Oh, look at those air bubbles in my line." I froze! I didn't know what to do. I couldn't keep drawing because nothing was coming out, yet I couldn't push anything through because the air would go straight in and kill him. Clark laughed at me (Clark laughs when he's nervous) and I just sat there holding the syringe making sure not to push or pull. Clark said, "You have to push it through. There's nothing else you can do." He tried to be comforting by telling me that all the nurses say it takes a lot of air to kill someone. How much is a lot? I freaked and told him I couldn't do it. He said he would do it himself if I just hooked it up. Taking a deep breath and looking away, I pushed the saline back through and guess what, Clark is still alive today.

Next challenge - giving a shot. Clark receives a Neupogen shot which boosts his white blood cell count. He was getting it at the hospital but since they want all his levels way up, they sent three doses to be administered at home. I have never given a shot before except to a cat. Clark was pretty nervous and coached me on how to do it. I think I was more nervous than he was but tried not to let on to him. This is a painful shot even when a nurse gives it so I didn't want to add to that pain by doing something wrong. Clark said you can't go slow, you have to go fast but not to jab it in. We went back and forth for a few minutes before I finally jabbed it in when he wasn't expecting it. I surprised myself. He said it hurt, but only just as bad as usual. The next night went much better. I hope I don't have to get used to it though. The video isn't the best quality, it's dark and you can't see faces, but you can still hear us.

Those are my two horror stories so far. Not hoping to add to the list.

Turn off the music at the bottom of the page before clicking play!