Our Week

Our medical EOB's and bills! Thank goodness for insurance!!

Boy, I'm trying to keep up the best I can with Nick's sickness, but it has been a crazy week. On Tuesday we saw the liver specialist at the U. Nice guy, not at all what I pictured in looks or personality, but seemed very knowledgeable and honest. After listening to the last 4 months of Nick's health, he told us that he was leaning toward another diagnosis which is called PSC (Primary Sclerosing Cholangitits). It is very similar to the PBC, but is found more in men, especially those with IBS. HOWEVER, because the MRI showed no strictures in his biliary ducts (which is a big indicator of this disease) he was not 100% positive that is what he has!! He also said that PSC does not come on suddenly like it did with Nick. It is usually very slow in progressing. Dr. Box thought that Nick was very atypical! Great!!! So, he started Nick on an antibiotic (he was running a fever), did a chest X-Ray to check for pneumonia, and ordered some more blood tests. One blood test looks at a specific protein in the blood that might help us know a little bit more. So, not really encouraging. We came home pretty bummed.

The next day, Nick went downhill. He had not had much to eat or drink the day before, so he was very weak, dizzy, and fatigued. We called the Dr. and asked if he could get a feeding tube. They made us come into the office to check him out and then they set everything up for Thursday. He was not looking good.

On Thursday, he had to go 4-6 hours without food/water, so his last drink was at 8:30am. When we arrived at the hospital there was some confusion on who had authorized it and who was setting up the home health care nurse. By the time he was done it was around 3:30. Nick said putting the tube in was horrible (almost as bad as his bone marrow biopsy). The only thing that got him through it was that he knew he needed some nutrition. So we headed home and just as he was getting into the house, he passed out. I was trying to hold him up so he wouldn't hit the garage floor and yelling for my father-in-law to come help. It was a scary moment. For the rest of the night I was on the phone trying to get everything set up for his first "feeding". He can feel the tube in his throat and so he didn't want to eat much because it was bugging him. Finally, at 9:30pm a home health nurse arrived to teach us everything about the feeding tubes. He is supposed to spend 14 hours a day hooked up to the machine that pumps high-calorie nutrition into his system. Each feeding we increase the amount to help his body adjust to the solution and give him more and more substance. Today, he has already noticed a difference in his energy level and overall dizziness. I talked to both of his Dr's (Dr Box and Dr Poole) and gave them an update. They gave me some things to watch for so I will know if we need to take him to the hospital. A positive sign is that when the home health nurse drew his blood last night and Dr Box compared it to the labs he had done on Tuesday, Nick's liver enzymes we going down! They are still very, very high, but at least they are going in the right direction! I hope they continue that way. Hopefully, this medication that helps both PBC or PSC is starting to take effect.

So, an eventful week. I know all this information is very boring, but it makes it easier to explain what is going on rather than repeat it to everyone I talk to. (It also helps keep a good medical history for future reference.) I'm learning so many things about "life" through this experience and I hope that when things slow down I can write more about my thoughts during it all than about our everyday actions.

Easter 2009

Dressed up for Easter Sunday
Easter egg hunt at Grandma's

Emma and Brielle busy egg-hunting

Their Easter baskets from the Easter bunny

The first egg of Easter!!

Fancy! Fancy!

Preschool Egg hunt with my antique basket!

This year, our Easter celebrations started with Emma's Preschool egg hunt at the park. I thought it was cute that she wanted to use the Easter basket I had when I was a child. Then, Emma went with her cousins to their Grandma Jane's for an egg hunt on Friday. She got three dollars! Easter morning started early with the girls looking for their baskets and eggs before church. Then, we got them dressed up in their fancy dresses from Grandma Becky. They looked so beautiful!! After church, we had an egg hunt with the cousins at Grandma Becky's before going to Grandma Judy's for another Easter surprise. I think Brielle might be our chocolate monster because every time I turned around she had another Reese's PB cup going in her mouth. Emma's favorite item was not the candy, but a baby horse (stuffed animal) to go along with her "mother" horse, Spirit! And I have stolen many Cadbury egg's from their baskets!! It was a fun weekend!

Appts.....Appts.....Appts

So I thought I would write down what we have been doing this last week with Nick. Appointments!!! (4 in the last week!!) Once Nick started tapering off the steroids, he felt worse. He lost his appetite which was the best thing he had going, so we called the Dr's office to come up with some plan. They told us to see a hematologist for his low white count and they scheduled a MRCP for Friday (which is like an MRI of the abdomen).
Thursday we saw the hematologist (who I absolutely LOVE) and he was a little confused on why we were there. His white count had gone back up (3.0)! He explained that he is not surprised that all of Nick's blood cell counts are low because when the liver is inflamed all of the blood gets stuck there so blood that comes from the arm has generally lower results (makes sense to me). Then, he gave us two Dr's names at the University of Utah that specialize more in liver disease. We called. Next appt was May 29!
Friday was his MRCP--it was done in 35 minutes. The results came back normal (no blockage in his biliary ducts).
Tuesday we went into the original gastroenterologist who decided that he probably had Primary Biliary Cirrhosis (PBC). Nick's liver biopsy showed that he had biliary duct scarring, BUT his AMA (antibody) test was negative so it leaves a 10% chance that it could be something else!! UGH! So he wanted us to get a second opinion at the U (the Dr he mentioned was the same one we had an appt with but they thought they could get us in sooner). The gastroenterologist also gave Nick some different medication that should help his biliary duct process bile better. I don't know that this will make a huge difference.
On Wednesday, we had another appt with a Dr at St. Mark's Hospital who had been referred to us by one of Nick's coworkers (the coworkers mother had biliary duct cancer and she loved this Dr). So, we met with him, but he does more surgical work on the abdomen so since Nick doesn't have any growths or tumors, he really couldn't do much for us. But he did tell us that we should see this Dr at the U (yes, the same one that the other two Dr's referred us to). So, the next step? We have an appt on Tuesday with Dr Box (the gastroenterologist who specializes in liver disease). I am really looking forward to this appt, because he sounds like the best guy to go to in weird liver cases. I am also looking forward to not having a Dr appt for 5 days!! I hope all of this made sense. I was starting to confuse myself!!

General Conference

On a happier note, I was able to get tickets to General Conference this year thanks to my wonderful friend Cindy. (She knew this would help towards my "30 List"!) The tickets were for Sunday afternoon and since Nick was not feeling up to it, I took my Mom. We had a fun time. We listened to the Mormon Tabernacle Choir on the way down, the weather was beautiful, the traffic was minimal, and that session was great. The music was my favorite part!! It is so powerful when you are actually there. I can't wait to reread some of the talks from Conference since so many seemed to be directed at me. Elder Holland has been one of my favorite Apostles since I was in college and I especially loved his talk this year!!! I also used a some ideas from March's Ensign to keep the girls more involved which helped them have fun and gave me a better opportunity to listen. I love Conference weekend!

Now what?

So, it has been 5 weeks of Nick's steroid treatment. On Friday, his test results were back.....not good. His liver counts are 5 times higher than they were before (which the steroid was supposed to bring down), he is even more anemic, and his white count is down to 1.3 (this is the most concerning thing). Well, we had an appointment on Monday to see the PA--of coarse the Dr is out of town this week--and she was more concerned with the low white count because it means he is more prone to infections. Since he was tapering off of the steroids, he will continue to do that over the next week and follow-up with the Dr next week. The PA was also going to talk to the other Dr's to see what suggestions they might have. She mentioned a MRI of his biliary duct (to see if there was a blockage) and another medication that they use for cancer patients (but he would have to get his white count up). She mentioned this autoimmune hepatitis is tricky because you never know exactly how the immune system will react. Besides being able to keep food down, I haven't noticed much improvement with Nick. He is still tired, dizzy, weak, and constantly thirsty. We are discouraged. I think that we have been pretty positive about the steroid's working until last week, and now I feel like we are back at square one. I keep thinking that he will just get better if I pray harder, have more faith, read my scriptures more, attend the temple, and be more patient with my kids. I feel like I have to be "perfect" for him to be "cured". I've wondered if his sickness is a test to teach me a lesson and I have yet to find the "right" answer. I hope that the reason the steroids didn't work is because something else is going on that they have to find because if they don't find anything else then what will we do??? I feel so selfish because I know that there are people that are dealing with worse problems and here I am complaining. Some days it is so hard to keep things in perspective. Today is one of those days.

Kindergarten.....here we come!

It's official! Our little girl is getting ready for kindergarten and yesterday we attended the roundup! What a moment. It's like the first phase in sending your child off to school. There were a few parent tears and some children crying as they split them into groups to go and sent them off with the teachers. I'm not sure Emma even looked back at me after I showed her where to go, but my heart ached for a moment. I always thought that parents who choked up about their children heading off to school were crazy. I mean, it's exciting to learn! School can be so much fun! What's the big deal? Sigh. Until it was my child. Then, my heart ached. How could this be that my child was already old enough for kindergarten? Was it this hard when she started preschool? I don't think so. I looked around at the other parents and children and tried to point out the ones that Emma would know. But, who am I kidding? I'm pointing them out so I can see how they are handling this. I'm finding those moms to see who I'm going to know as we send our children off to school. So, I will have someone to talk to when I try to hide my tears that first day. Tears will only be allowed in the car! I want Emma to see excitement on my face because she is thrilled to be going to kindergarten. She talked about the roundup the rest of the night and even did some of the worksheets they sent home. She will only hear excitement come out of my mouth! So, ready or not.....here we come!