Skip to main content

An Unexpected Hospital Stay at the Mayo Clinic

At the end of March, I found myself heading east on I-94 with my parents, leaving my husband and daughter behind. An hour into our trip, my husband called because Faith wanted to talk to me. In near tears, she asked if I was going to be home soon. Oh my breaking heart. The last time I had been away from her for more than a day was probably about 9 years ago.

The reason for my departure had started back in January when I began fasting along with our church. In my journal on that first day, I had written that I wanted God to reveal any internal problems or heart issues I needed to deal with. I was speaking of spiritual issues, but in His goodness, He also revealed some physical problems that needed taken care of.

During the fast I became extremely fatigued and didn't feel well at all. I began having chills and my husband encouraged me to start eating solid foods. I began eating soup, oatmeal, and other easy-to-digest foods, but none of it made me feel any better. Eventually, I lost my appetite altogether. One of the strangest symptoms, however, was that instead of losing weight, I looked like I was gaining. My abdomen had become enlarged and by the end of January, it felt hard as a rock.

I saw my doctor at the beginning of February. She did labs and x-rays and had also ordered at CT scan, which showed the fluid buildup was being caused by my liver. As soon as I heard the news, I wondered if it could possibly be related to my heart. I knew that patients born with a single-functioning ventricle who had the Fontan surgery were at risk for liver problems.

Speaking at Java JOY
I had to wait until March 1 to see a cardiologist from the Mayo Clinic who specializes in adults with congenital heart defects and who comes to Bismarck. He was convinced my liver issue was indeed cardiac related and wanted me to go to Rochester for more tests. I had to wait until the end of the month before my appointment was approved by insurance. 

In between that time I said a lot of prayers, had a lot of people praying, and by the grace of God, was even able to fulfill an obligation to speak at Java JOY. I spoke on Psalm 103 where it talks about the benefits of being a believer, including the healing of our diseases. Despite my symptoms and how I felt, I was still determined to stand on the truth of God's word.

Finally, on March 29, my parents and I set out for Rochester. It was 3:30 in the afternoon by the time we left Bismarck and we ended up staying in St. Cloud, MN. The next morning we made it to Rochester and ended up eating lunch at the Canadian Honker Restaurant, where we had eaten together 18 years prior. While Dad rested at the hotel right across the street, Mom and I made our way over to St. Mary's Hospital.

Mom and I shortly after arriving in Rochester
To make a really long blog post a bit shorter, my doctor decided to admit me to the hospital so that he could do some further tests and get the fluid removed. I went back to the waiting room where my Mom was waiting and began crying when I told her the news. 

I hadn't expected to get admitted, and all I could think about was my husband and daughter and how they were going to handle me being away for longer than anticipated. Because of my emotional state, I couldn't even talk to Rob over the phone, so Mom told him the news. He was actually quite relieved because all he wanted for me was to get well.

After getting settled into my room, I found out they were also going to be replacing my pacemaker. So the next morning, after that procedure, I had a CT scan, and then in the afternoon 3 doctors came into my room to discuss a paracentesis. 

Mom and Dad had been in the room and after they were finished discussing the procedure, Mom asked, "and where will you be doing this procedure?" When we realized they were going to do it right there in my room, they bolted out of there pretty quickly! 

I was a little freaked out about the big needle going right into my abdomen, but was even more freaked out when they brought 4 one liter bottles into my room. I honestly didn’t think they were going to fill all those bottles. But they ended up needing 7 of them! They removed a total of 6.3 liters and I ended up weighing 15 pounds less than when I was admitted.

The next morning (which was Saturday) I had my heart catheterization. All of my pressures looked great, which was good news, but they still weren't 100% sure where the fluid buildup had come from. I was discharged that afternoon (April 2) and since my parents felt more comfortable keeping me close by after having 3 major procedures, we stayed over in Rochester and made it home late the next afternoon.

In going through all of this, I learned that liver problems are pretty much a guarantee for anyone having gone through the Fontan. I feel blessed that I have gone for so long (33 years after my first Fontan and 18 years after the revision), and not have any issues at all with my liver. I have learned this isn't the case for many Fontan recipients, and that some of them have liver problems right away, even as children.

I also know that no matter what the medical world says, I can still look to God my Healer. He can heal my liver and He can heal my heart - I have believed that for many years and will continue to believe it. That being said, there are times I need help from the medical community and am beyond grateful for my cardiologist, Dr. Cetta and the many other doctors and nurses that cared for me at the Mayo Clinic. I must say that for the most part while going through this medical ordeal, I had a lot of peace. Everything went so smoothly, and I knew God was working things out on my behalf.

Dad, Me, and Mom, before leaving Rochester
So thankful for these two!
I am also very thankful for the many people who were praying for me during this time, and also to my parents. They had just gotten back from driving to Lincoln, NE and two days later they were on the road again taking me to Rochester. 

In my book, Having Faith, I acknowledged them with these words, "My parents did everything they could during my childhood to ensure I not only survived but thrived. Over the years, they have put on thousands of miles, said hundreds of prayers, and hugged away many tears." These words continue to be so full of truth, and I seriously don't know what I would do without them. 

Rob and Faith did great while I was away. Faith cried a lot the first night I was gone, but after that she and Rob felt total peace. Whenever I called and asked how she was doing she would say, "We're doing great!" It ended up being a great bonding experience for both of them. God certainly worked ALL things together for good! (Romans 8:28) 


Comments

  1. Cari I am so thankful for you and your gift of story telling. (or I should say truth telling!). Thank you for sharing your ordeal here. It is amazing how God has carried you and your family through so much. He is a great God. May he continue to bless you and your family.
    Love in Jesus, Brenda

    ReplyDelete

Post a Comment

Popular posts from this blog

Getting Used to Our New School Schedule

Today marks Faith's 8th day of school and we are all adjusting to a new schedule. Faith has made huge strides this past summer in sleeping better and having more energy so we decided to have her go to school from 9:00 a.m. to 3:00 p.m. 5 days a week. This is a change as last year she did not go Tuesday and Thursday afternoons due to how tired and worn out she would get. Faith's first day of 4th grade School starts at 8:30 a.m. but we asked if it would be okay for us to get her there at 9:00 instead. This allows us to more time to get her first feeding into her before she even gets to school. Her aides noticed last year that when we brought her to school without any food in her tummy, she was pretty sluggish and tired upon arrival. Sometimes, after getting her to school she wouldn't start getting her feeding until after 9:00 a.m. which meant, that because she gets a feeding every 3 hours, her last feeding of the day didn't end until 10:00 p.m. Another advantage to

A Real Pain in the Arm

Last Wednesday I had my yearly doctor exam and when she said I should get my tetanus shot updated, I didn't think twice about it. The nurse said my arm would be sore for a couple of days, gave me a handout and stuck the needle in my arm. The next day my arm was sore and although I found it a little harder to pick up and carry Faith, I was glad the pain wasn't going to last long. Boy was I wrong! But not only was my arm sore, my whole body was. I felt achy and extremely tired. According to a medical site on the Internet, these were mild side effects of the Tetanus shot. If these were only mild side effects, I would really hate to have them at a moderate or severe level. On Friday, two days after getting the shot I felt so tired that I took a four hour nap after getting Faith off to school. Then on Saturday I took a three hour nap up until 7 o'clock but still felt tired and was able to go back to sleep around 10. On Sunday, finally the fatigue started wearing off and I didn

Goodbye to Our Special Tomato

Today we said goodbye to our Special Tomato adaptive car seat. And special it was. It helped Faith stay safe and secure in our Hyundai driving her back and forth to therapy appointments, shopping excursions and many other activities. It also helped us through our time of not being able to afford an accessible van. Like all adaptive equipment , the special car seat was expensive and although it is the law that a child is secured in a car seat while traveling in a vehicle, neither health insurance nor Medicaid would pay for it. Thankfully, we were able to receive funds from the fundraiser, the Great American Bike Race ( GABR ) which helps families pay for services and equipment that insurance doesn't cover for kids with cerebral palsy and related disabilities.  After doing research on the Internet and talking to Faith's physical and occupational therapists, we decided to go for the Special Tomato adaptive car seat. You would think something with that name would be r