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!!