He's Home!

Dr Hutson at Nick's 1 mo post-op appt!

Dr Sussman with Nick at his 1 mo post-op appt!

His twice-a-day medications!

Well, Nick was released from the hospital on May 29. It was 2 days shy of 4 weeks from his liver transplant. The girls have been thrilled to have him home and have been showing him their toothbrushes and pajamas....anything to sit by him on the couch. I think it overwhelmed him at first once he realized that a house with children isn't really quiet or boring for very long. Nick's biggest complaint right now is that he can't sleep through the night. He has tried two different medications, but nothing gets him a deep, full night. (He does have me bring him snacks in the middle of the night which is the good news.) He is eating or snacking all the time. In the 10 days he has been home, he has gained about 10 pounds! (Too bad I can't give my home-cooking the credit!) He is also getting stronger. He has mostly been using a walker to get around, but his physical therapist brought a crutch/cane today and walked down to the end of the street with him. Nick says it is much easier to maneuver than his walker, so things are getting better each day. We still take him down 3 times a week for lab work and on one of those days we get to hang out in Salt Lake for a couple hours until his clinic visit with all of his doctors (too bad he can't go to the movies--it would almost be like a date!) I love his doctors! Dr Sussman and Dr Hutson are his hepatologists. They evaluate how well his body is accepting his new liver. Dr Sussman is so funny! He makes jokes all the time and if you are not listening you miss it. Dr Hutson was the one that performed his liver biopsy and called me the morning they knew they had a liver for Nick. He has the biggest heart and truly cares about Nick's progress. We will continue to see them every week through June, I think, and then maybe every other week. Right now, we function day by day, focus on all of the progress Nick is making, and are grateful that he's home!

Emma's Month

When did my daughter turn 15?

Her "special" night--she got 2 bouquets and a princess balloon!

showing off her costume

striking a pose on stage before the performance

Emma and I after the recital

She looked beautiful in yellow!

Ready to twirl for her Princess ballet dance

Emma waiting to tap dance to "Party at Mickey's house"

Emma with Miss Cindy!

Questions: Emma would buy a lot of horses if she had a million dollars--she wants to be a horse rider when she grows up--she would go to the zoo if she could go anywhere in the world!!

It's official! Emma has graduated preschool!

singing "Do Your Ears Hang Low"

Isabelle, Emma, Jill at Preschool graduation

Emma and Brielle's at Jerry's Nursery (last field trip)

The month of May brought more commitments for Emma as she finished up preschool and dance. Her two years in preschool has been a lot of fun and she has learned so much! Dance was a new experience for us this year, but she loved it. The night of her dance recital she kept saying, "I'm so lucky I got flowers! It is my special night!" She also got complimented at McDonald's by some older girls on how beautiful she looked! I am so proud of how hard she worked this year in preschool and dance! She has grown up a lot and I love seeing her accomplish new things!

One Month Ago....

...today was the date that we took Nick into the hospital. Some of you may know the story, but for my journal/record keeping I wanted to write down what the last month has been like. However, I will be leaving out some very personal, difficult, spiritual, and emotional moments that are not appropriate for the blogging world but for my own journal. It has been one roller-coaster ride (that is still going)!

April 26 (Sat PM/Sun AM)
Nick had been on a feeding tube for two days. The first day he felt a little strengthened but by Sat. he was not doing much better. Thanks to a spiritual prompting by both our mom's that night they made us go to the ER at the University of Utah. In the ER his heart rate and temperature was high, and he had really low blood pressure. Since it was the middle of the night, they told him he was going to be admitted to figure out what was going on. Obviously, we knew something was going on with his liver, but we didn't know if he had a secondary infection on top of that or if his sudden decline was still associated with the liver. Once he was on another floor, they ran multiple tests: chest X-rays, CT (abdom), and tons of lab work.

April 27-28
It was brought up that he had been exposed to TB before his mission so they moved him into a private room where either he had to be masked if he had any visitors or visitors had to be masked. The nurses came in with full head-gear that made them sound like they were from Star Wars. Nick had more lab work, a MRI (abdom), CT (brain), bone marrow biopsy (#2), MRI (brain), blood transfusion, PIC line put in and the doctors still had no answers. Luckily, during this time Nick was really confused and doesn't remember anything. (Confusion is a sign of liver failure.) I repeated his health history so often I sounded like a broken record.

April 29 (Wed)
They determined Nick did not have TB so they released the masks. He had a lumbar puncture (spinal tap) in the morning and a liver biopsy (#2) in the afternoon. Around 5:00pm, he sat up to go to the bathroom and fainted. The doctors were right outside his door and determined that he was bleeding internally from the liver biopsy (when the liver is failing it is not capable of clotting blood). The doctor that did his liver biopsy has only had 2 patients bleed in 20 years (Nick was the second). They started pumping fluid into Nick and rushed him to the ICU. There they put in a central line, an arterial line and put him on a ventilator. I was able to see him for a moment before they got him on the ventilator and it was very shocking and scary. We had to wait several hours to see if the bleeding would stop. It didn't --so around midnight they took him to the OR to take out the blood collection. The doctor who performed the surgery thought things went well, but said the liver is like a sponge that can constantly ooze blood so it is hard to completely get the bleeding stopped.

April 30 (Thurs)
Several hours after Nick's surgery they let us into his room. The doctors were very somber. They told us his blood pressure was so low during the surgery that it was possible he could have brain damage. They said the next 6-12 hours would be crucial to know if he would even make it. He had been given 21 liters of fluid which made his body enormous. He was almost unrecognizable. The liver transplant team came to talk to me about getting everything ready to put him on the liver transplant list. Later that day, he started to respond to us by squeezing our hands and wiggling his toes. We were ecstatic!! This was the longest, hardest day of my life. There are not enough words to describe what emotions I went through that day. It is almost too difficult to write this much.

May 1 (Fri)
They took him back to the OR that morning for an abdominal wash-out (they had left his abdomen open but packed because he was so swollen. They told me this was routinely done to prevent infection, but I was very leery. Nothing to this point had been normal or routine. However, it went well.) We were still waiting for the liver biopsy results to come back to determine whether it was autoimmune hepatitis or lymphoma. Nick had been diagnosed with autoimmune hepatitis back in March and had been put on steroids for 6 weeks which made his liver functions worse. Still, the doctors put him on high doses of steroids to see if it helped. The biopsy showed no lymphoma and the steroids made his liver worse, so they decided to put him on the liver transplant list.

FYI-- When you are put on a liver transplant list, most people receive a MELD score which prioritizes patients on the severity of their liver disease. However, in Nick's case he was categorized as a fulminant patient which means he was in acute liver failure and had less than 7 days to live. That put him as a "Status 1" patient which means he was at the top of the list in our region (UT, CA, NV, AZ, NM). They estimated they would have a liver for him within 72 hours. He was placed on the list at 6:00pm.

May 2 (Sat)
I received a call at 9:10am from Dr Hutson who told me they had a liver for Nick. It was coming from out of state and they would be ready for surgery by early evening. I felt excited, anxious, and scatter-brained....like my mind was going through all of this information as I was trying to get my stuff together for the hospital. His surgery would be anywhere from 6-12 hours. They started at 10:45 pm. I felt very calm and peaceful about everything at that point.

May 3 (Sun)
Dr Guyowski (one of his transplant surgeons) came in at 4:30am! Just under 6 hours!! I was amazed. The doctors were very optimistic because he was young, healthy, and his liver failure had been so quick that it had not affected his other organs! When I first saw him, he looked so good. Much better than after his emergency surgery. They started a constant dialysis to drain off the extra fluid.

May 4 (Mon)
He was doing great. He winked at me that day!! He gave a thumbs-up to the doctors. His liver functions were down, bleeding was down. He remained on dialysis.

May 6 (Wed)
They took him off the ventilator!! His throat was sore. He could barely whisper. More dialysis.

May 7 (Thur)
They stopped the continuous dialysis. They let Nick have small sips of water. They stopped his feeding tube because his pancreas was inflamed. Instead they gave him IV nutrition. I think at this point Nick realized that he had had a liver transplant. He was completely shocked. He told me, "I didn't realize I was that sick!"

May 9 (Sat)
He stood up with help from the physical therapist. They took his arterial line out. He had a reaction to one of the anti-rejection medications that made his heart rate, temperature, and respiration's go up. This gave me a good panic attack, but luckily it resolved an hour later.

May 11 (Mon)
Central line out. Dialysis is done. They moved him out of the ICU to the IMCU (Intermediate Care Unit) which was like moving from the Ritz-Carlton to Motel 6. We were so spoiled with incredibly smart, caring nurses in the ICU. Nick finally got to eat!! Jello, broth and ice cream!!

This is where I stopped my detailed note-taking. Over the first two weeks I had only been home twice. Once they moved him to the IMCU, I came home to be with my girls who had been well-taken care of by our family, but were tired of being shuffled around. Emma also had a lot of things going on with dance and preschool. Nick's dad stayed with him overnight for most nights. On weekends my mom has had the girls sleep over so I could go spend the nights at the hospital.

Nick spent a week in the IMCU. They had him doing physical therapy every day and were trying to get him to eat more solid foods. Last Monday (May 18) they moved him to the 6th floor which is like a short-term rehab unit. He has made steady progress each day with his appetite and physical strength. Unfortunately, Nick has suffered some of the side effects of all the medications he has been receiving like insomnia, nausea, and mood swings. All of those seem to be getting better. It has been hard mentally for him to comprehend all that he has been through. At first, he told me he didn't want to know all the details, but little by little, those details have been mentioned. He is overwhelmed with it all. However, he is thankful that his life was spared. We are both extremely grateful for all of the support we have received. What amazing, generous friends we have!!!! We appreciate everyone that has called, prayed, visited, fasted, put his name in the temple, donated blood or money, or donated their time helping with our girls, our yard, and our home. We hope we can eventually pass on all of the service that has been done for us. As we have looked back on this last month, we realize how many blessings from our Heavenly Father we have received. We know the last 5 months have happened according to His plan. It has been a trial of faith, patience and endurance but everything worked out perfectly.

Unfortunately, it is not the end of our story. They are talking about discharging Nick this Friday. I am scared to have him at home even though I have missed his companionship. He will be on a lot of timely medication. He will still be trying to get his strength and appetite back. I just don't want any complications to happen after he gets home. His recovery could take months. We will be going back to the hospital 3 times a week for lab work and follow-ups. I guess it will be a busy summer! But, we have made it this far! As for the next month, onward and upward!!

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!