Showing posts with label health. Show all posts
Showing posts with label health. Show all posts

Saturday, January 28, 2023

Faith's First Extended Hospital Stay

It's hard to believe that Faith is 19 years old and has never had a major illness or extended hospital stay since she was in the NICU. The only other time she had to stay in the hospital was when she had her g-tube placed when she was two years old. That is, until now. And to think it all started with her having a simple outpatient procedure that had nothing to do with the reason she was hospitalized. 

Day 1: Thursday - the Procedure 

Faith and I got up extremely early as she had to be at the clinic for her outpatient procedure. The procedure was a lumbar puncture in order to do a test dose of medication called baclofen, which would help reduce high muscle tone and spasticity. If the results were good, and it helped her muscles relax, we would have the option (in the future) of inserting a baclofen pump so that she could receive the medication continuously via a catheter in her spine. 

I stressed the importance of giving her anti-nausea medication before the procedure because I know how anesthesia affects her. The procedure was very quick and after she woke up, she was happy and relaxed. Her physical therapist came to see her and seemed impressed with the results. The physician who ordered the test also came to check on her, and he was happy with the results, too. I was relieved, because she seemed to have sailed through this without any major complications. She had to lie on her back for about 6 hours before she could sit up. For Faith, this is not an easy thing to do as she much prefers to sit up in her chair. However, they were able to sit her up in bed a bit to help her drink some water, juice, and eat some belvita bites. 

Faith sits up about 6 hours after her procedure and seems totally fine. 

Finally, she was able to sit up in her chair and looked happy and relaxed. About 45 minutes later, though she began to doze off and looked a little pale. She began to retch and try to throw up. After a little bit, she said she wanted to lay back down. The nurse and I were both confused by this because she couldn't lay down while throwing up, plus, she never asks to lay down. Even in the past when her tummy was upset, she wanted to be sitting up. She also began crying that she wanted to go home. I told the nurse we would be okay to go home because I figured the anesthesia was upsetting her tummy. She gave her a dose of anti-nausea medicine, which seemed to help. 

At home that evening, she wanted to go to bed right away, which isn't like her at all. I sat with her on the edge of the bed and all she could say was, "Mom could you please pray for me." Eventually she began to fall asleep, but then was up every couple of hours throwing up. 

Day 2: Friday - First Trip to the ER 

After not sleeping well, Faith wanted to try to sit up in her chair, so I put her in it, but it seemed to make her feel worse. I asked if her head hurt, but she didn't really say. I called the department where she had the procedure and told them Faith had a rough night with lots of nausea and vomiting and that she seemed worse sitting up in her chair. The nurse practitioner said she might be having a reaction to the baclofen and told me to call the doctor who had ordered the test. 

I called him and he said he doubted it was the baclofen because it shouldn't be in her system anymore. I told him I was concerned about dehydration, and he confirmed that I should take her to the ER. She managed to be able to sit in her chair for the drive there. At that point, she was throwing up bile. As I drove, I felt completely helpless as she continued to throw up all over herself in the van. 

Finally at the ER, I checked her in, and we had to wait about an hour before going back. In the waiting room, I felt so bad for her, it was all I could do to keep from crying. She looked so pale. They eventually called us back and took her vitals. Since her vitals were fine, we had to go back to the waiting room and wait for something to open up. We sat there with 3 other families and a guy who was groaning in pain from a kidney stone. It was miserable. I just prayed silently that a room would open and also prayed for all the other people in the waiting room that they would get the help they needed.  

When they called Faith's name, I felt a little guilty for taking her back before kidney stone guy. He had resorted to yelling at the receptionist that he was in pain and needed to be seen NOW! But my Mama Bear instincts were in high gear, and I quickly wheeled her back. They put in an IV and started her on fluids and anti-nausea medication. After a couple of hours, she seemed to be feeling better. They took some labs as well. They also said if she continued to vomit, they could do a CT scan to make sure nothing was going on in her digestive tract. 

After a while she began asking for juice. She also ate a few small bites of a cracker. We had been there for about 5 hours, and she began crying because she just wanted to go back home. I didn't think we would need the CT scan, so we went back home. I realized that we didn't have any apple juice at home and I really didn't want to stop to get any. As soon as we got home, I texted my mom and asked if she could bring over some juice and also some food for me. All I had eaten since Thursday morning was 2 bowls of cereal and a bowl of oatmeal. 

Thank goodness for the apple juice because that is the only thing Faith wanted to eat or drink. All through the night she kept waking up asking for more juice. I really thought the worst was behind us. 

Day 3: Saturday - Ambulance Ride to the ER 

Faith woke up happy and said, "I feel so much better!" Her face had more color to it, and she was actually smiling. I felt so relieved. I asked if she wanted to get in her chair and go watch TV, which is something she hadn't really done since Thursday. She was excited to do that, so I got her in her chair and wheeled her to the living room. 

Right after I turned on the light she said, I think I need to go back to bed. I thought maybe she was just feeling too weak to sit up. She hadn't eaten anything since Wednesday before the procedure. I put her back in bed and asked if she wanted to try some food in her tummy. I diluted some of her blended food and put it in her tummy. She kept it down. I also gave her water, plus she kept asking for sips of juice. 

Late that morning respite care arrived so I could take a much-needed nap. I filled her in on everything that had been going on and we talked about the possibility of Faith having a spinal headache or a migraine. Before laying down, I gave Faith a little bit more diluted food. Faith then asked to sit up, so her respite care provider sat up with her on the edge of the bed, and she began throwing up all over again. 

I knew Faith would be OK with Chris, so I went to lay down for a bit but didn't really sleep as I kept wondering what could be going on. After Chris left, Faith still didn't feel the best, so I called the doctor who had ordered the initial test (he had given me his cell phone number and told him to call if she wasn't getting better). I told him she seemed to get worse when she sat up. He said she may have had a little bit of spinal fluid leak and told me to just keep her laying down for a couple of days and that the fluid should build back up on its own. He asked if the injection site was swollen or red or anything, and I told him it looked good. He just said to keep any eye on her. 

Faith had fallen asleep and I went into the living room and just began to cry. I felt so awful for what she was going through. I was also getting very scared for her because she was so sick. I really didn't know what to do. I didn't think I should keep her home, but I didn't how to get her back to the ER if she was having trouble sitting in her chair. All I could do was pray and ask for guidance. I also sent out some texts and asked members of our church family to pray for her. 

My sister-in-law sent me this scripture, right when I needed it the most! 

When I went in to check on Faith, I thought she felt really warm and took her temperature. It was 101.3! She woke up and I told her I needed to take her back to the ER. I asked her if she could try to sit in her chair just one more time. She agreed to try it but as soon as she sat down, she wanted to get back out. I had no choice but to call 911. I told her she was going to go for a ride in the ambulance. I reminded her about the episode where Mr. Rogers showed his television friends the ambulance and what a paramedic was like. 

As we waited, I scurried through the apartment trying to pack up what I thought I might need. The ambulance guys arrived and Faith asked them for high-fives. They were great with her! After about a 10-minute ride, we arrived at the hospital and this time, she received immediate care. The doctor was in the room right away ordering every lab under the sun. 

They put in another IV (Faith's 3rd in three days) and got her going on fluids and anti-nausea medication. Her vitals were not so great as her blood pressure was really low and heart rate unusually high. They drew lots of blood for the lab work, like 7 vials of it. The other test they wanted to do was a urine sample, which Faith had never had before. It took three tries to get a catheter in her to draw out some urine. Thank goodness for the music of Michael W. Smith, which I played for Faith on my phone to distract her. 

They also wanted her to do the CT scan, which she handled like a pro. When we got back to the room, she was feeling better and kept asking for juice. They couldn't give her anything, though, until after the results of the CT scan. Finally, the test results began coming back and the urine sample showed a uterine tract infection (UTI). There were no abnormalities on the CT scan. The doctor said they would begin treating her for the UTI but he also wanted to do an MRI to ensure there was no complications from the lumbar puncture. He also wanted to admit her to the hospital. Thankfully, her vitals had stabilized, and they had a room open on the peds unit. 

Day 4: Sunday - Admitted to Hospital 

It was about 2:30 in the morning when we finally got up to a room. Thankfully I had grabbed my glasses and contact lens case, so I could at least take them out and still see! Faith was super tired but could not sleep. I tried my best to get comfortable in the reclining chair and as soon as I would get somewhat comfortable, Faith needed me for something. That first night I didn't really ask for help getting her changed or trying to get her in a more comfortable position. There were a few times she asked to sit up in bed, so I sat her on the edge with me but then she wanted to lay right back down. I was just so used to looking after her that it didn't really register I could get the nurse to do these things for me! Faith really wanted me to lie right next to her in bed, which is the only time both of us got a few hours of sleep. Of course, the nurse was in early to draw labs so we didn't sleep for long. 

That morning I thought about how crazy it was that they found she had a UTI. At home, there were no symptoms of that at all. The only thing that may have indicated she had one was the night before she kept asking to be changed even though she wasn't going to the bathroom because she was so dehydrated. I thought maybe she was sore in her back where they did the procedure, and she didn't know how to verbalize that. I wondered if she had never had the lumbar puncture if the UTI wouldn't have been caught until it had gotten much worse. 

All that day Faith was very quiet and not feeling well at all. We did have some visitors and even though she didn't feel like talking, Faith was still happy for the company. She also wanted to make some phone calls. She wasn't very talkative, but she just wanted to do something to pass the time. She didn't want to watch TV or her tablet. She was also very restless and kept trying to move around to get comfortable. I knew her back was sore from laying so much, and I asked if they could give her something for that, which they did. 

That night, Mom came to stay with Faith while I went home to get some much-needed sleep. Faith wasn't too happy about this, but I knew she would be okay with Mom getting the nurses if she needed them. On the way out, I explained to the overnight nurse that I was leaving for the night. I asked if she would be okay doing Faith's meds without me through her g-tube and about changing Faith and repositioning her. She just looked at me like, "Uh yeah, that is my job!" 

It felt so weird being in the apartment at night without Faith. I went into her room and realized she had thrown up all over her sheets and they were in the wash, so I did some laundry and made her bed. I sat in the living room and prayed and read Psalm 139. I knew that God had made Faith and that He knew exactly what was going on with her. I simply needed to trust in His plan. 

Day 5: Monday - One More Test 

On Monday I woke up and got back to the hospital as quickly as I could. It's a good thing, too because they were just getting Faith ready for her MRI. I found out I could not go into the room with her because of my pacemaker. Since Mom was still there, she said she could go in. They gave Faith some Ativan to keep her relaxed and she got to listen to music during the test. Faith stayed calm and did great! 

After Mom left to get some much-needed sleep (and a visit with the chiropractor after sleeping in that chair), I sat with Faith and just waited around for the test results. I noticed she wasn't at restless and she actually took a nice long nap. I was trying to keep friends and family updated so I spent that time texting and sending messages. I also put out a message on the parents of kids with special needs Facebook group asking if anyone's wheelchair-bound daughter ever felt pain sitting up because of a UTI. I received a few responses. One mom said her daughter needs to be in a tilted position if she has a UTI as she is uncomfortable when sitting upright. Later that evening we talked to some of our Inspire friends over the phone and it was the first tiny smile I had seen from Faith in a couple of days. 

The doctor came in and told me the MRI showed no abnormalities. I asked about a spinal headache, and she said if Faith had one, she would have a severe headache. I told her we don't know that she doesn't. I explained that Faith isn't really able to verbalize where she is feeling pain or what kind of pain she is in. The doctor just said that we know she has a UTI so let's treat her for that, first. 

That day they also wanted to get some liquids into her. Part of the reason she was nauseous was that her tummy was completely empty. First, they put some clear Ensure through her tube to make sure she could keep that down. They then wanted to proceed with some commercial formula. They knew I did a blenderized diet at home for Faith, but they said it was against hospital policy to bring any blended food in for her as they didn't know the exact content of the food. I was like, well I could tell you exactly what I put in there and how much, but they still wouldn't go for it. I decided it was one battle I didn't want to fight. I figured it's not like it would be very much and for very long (hopefully!) 

That evening they gave her one ounce of Jevity. It is super rich, and her tummy was rumbling after they gave it to her. They were also checking her blood sugar and after getting just one ounce of the commercial formula her blood sugar was 196! Faith had seen the color of the formula in the bag (it was cream-colored as opposed to the green stuff at home). After it finished, she said, "Now I know what a milkshake tastes like!" 

I told them they needed to dilute it quite a bit or else she wasn't going to tolerate it. Thankfully, though she kept it down. She was also able to get off the anti-nausea medication. Later that day, they gave her a diluted feeding, and another one overnight. 

Day 6: Tuesday - Finally Feeling Better 

Faith and I woke up around 7 after getting a pretty good night of sleep. One thing I needed to do that day was go over to the Heart and Lung Clinic for my pacemaker appointment. Faith said she would be okay with the nurses for a couple of hours. She knew to call for them if she needed help. But I also knew she would call for them just to have something to do! Sure enough, the second I walked out the door, I heard her call, "Nurse! Nuuuuurse!" 

My appointment went okay. I have about 18 months before I need to get my pacemaker battery replaced. I just got it replaced in June 2021, so it didn't last that long, even with the new lead they put in. I saw my pacemaker doctor from Mayo and he said when I get it replaced, there might be some more options available with different features to help make the next one last a little bit longer. I hope so!

Back to Faith...she was fine when I got back. Unfortunately, the nurse didn't know how to find Truth Fellowship Live on her tablet (which is the only thing she wanted to watch during most of her stay). The only other little hiccup was that they hadn't secured the extension to her Mic-key button, so the feeding leaked onto her shirt. When they went to change her clothes, she asked, "Do you have any tie-dye shirts here?" 

I could tell she was feeling so much better. Even the nurses were commenting on how much better she looked than yesterday. They thought sleep and some calories helped to perk her up. I also attributed the sudden turnaround to the hundreds of people who were praying for her. I was still nervous though about how she would do sitting in her chair. 

That evening, the nurses transferred her from her bed to her chair. She sat there for a few seconds and then got a big smile on her face. "Finally!" she said. I had her chair tilted back and after about 20 minutes I put it upright. I asked how she felt and she said, "It's a miracle!"

Faith is finally able to comfortably sit up in her chair! 

She ended up sitting in her chair for 3 hours! An anesthesiologist had come in to talk to me about the possibility of her having a spinal headache and he said she might have had one, but they sometimes resolve on their own. He said he would not have recommended the blood patch procedure on her, considering all that she had just gone through. He said he would only do it as an absolute last resort if she continued to have trouble. 

After that Faith kept asking when she could go home. We all told her that if things continued to go well, she could go home the next day! 

Day 7: Wednesday - HOME! 

Faith and I both ended up sleeping until 10:00 a.m.! They no longer did morning labs because her potassium levels had gone up to normal. The only things she was getting was feedings and antibiotics for the UTI. Unfortunately, she lost her IV twice during her time in the hospital and the night before it had started to come out, so they had to put it in her leg. She had one more dose of antibiotics to get through the IV before they could take it out. 

They also wanted to do 2 full-strength Jevity feedings and see the doctor.  Faith was pretty impatient for the doctor to arrive...she was so ready to get out! The first thing she asked when she saw him was, "When can I go back to work?" He didn't realize that "work" was her day program. He told her she should probably stay home and rest for a couple of days. 

After all that, we started getting ready to go home. Just as we are packing up, we got a surprise visitor - Uncle Todd! She was soooooo happy to see him. A little while later Mom came in as I had asked for her and Dad's help to get Faith home. Somehow, we had accumulated several bags full of stuff that we had to get back home. 

Faith is ready to bust outta here, with help from her uncle! 

My dad went with Faith and I to the pharmacy so she could stay in the van while I went to pick up her antibiotic, which she would need to take for the next 3 days. Then it was homeward bound. She was so happy to see Albert (her fish) and her room. It had all been quite the ordeal and we were both happy and relieved to be home. 

We are so thankful for the wonderful care she received while in the hospital at St. Alexius. The nurses were amazing - from the ones in the ER (like Emma who Faith said reminded her of Auntie Amber), to the ones on the pediatric floor - Brittany, Jessica, Janelle, Pam, Cheryl, and Melissa. They were all angels and I never want to forget them. I am also thankful for all the prayers and help from my parents, especially my mom for staying over one night and for being willing to help wherever needed. It also helped to get visitors to pass the time. 

One final thought is that I'm pretty sure the baclofen did not cause anything. When I talked to the health coach from the hospital over the phone, she said she had a UTI once and didn't feel well at all and just wanted to stay home in bed. She said the anesthesia probably exacerbated the nausea and vomiting since it went through the kidneys. I think everything just happened at the same time, so it was hard at first to pinpoint the exact problem. I'm not in a hurry though to do anything medical related for a while, and I don't think Faith is either! 

Some of the gifts Faith received. 




Thursday, June 30, 2022

One Year Ago: My Trip to Mayo

Today I thought it was quite fitting that on my one year anniversary of my new pacemaker, I was wearing a 24-hour Holter monitor! It's not because I'm having any issues with my pacemaker. Instead, I'm just preparing for my upcoming cardiology appointment next month. 

Thankfully, my cardiologist from Mayo comes here to Bismarck, so I don't have to make the 1,000-mile round trip again! By the way, isn't amazing how small these Holter monitors are nowadays? I remember having to wear much larger ones that could not be hidden very easily, plus it was hard to sleep being attached to a big clunky machine. Last night, I hardly even knew this little one was there!

I got my original pacemaker in August of 1999 but because the lead was getting old, my cardiology team wanted me to get a new one. It was last year on this day that I was recovering from the procedure. It still bends my mind how God took care of every single detail and that I had found enough people to look after Faith for the five days (and four nights) that I was gone.

I am still incredibly grateful for all those who stepped up to look after her. I'm also thankful my sister was able to take me there. Faith still talks about it like it just recently happened. She often mentions that her aunt and little cousin stayed with her a couple of nights and how patient she had to be. 

She also talks about how our friend Mandi looked after her, and she even had her kids and husband come over to visit. I don't know what I would have done without her as she came every morning to relieve the overnight staff and get Faith out of bed. She even sent me a picture of Faith every day!

Faith had loads of fun while I was gone!

Faith told me when Grandma and Grandpa were here, Grandpa did his crossword puzzle and then took a nap. (It's just funny which details she remembers!) There was also the respite care staff who stayed over a couple of nights and also a few other friends who helped out. She will truly never forget it. Most of all though, I think she is proud of herself for getting through that time and being so mature. It helped that I got to talk to Faith every day and even did a couple of video chats with her, which she loved.

Even though it was for a medical procedure, my sister and I made the best of it and had plenty of laughs along the way. Especially when on the way home our sister was heading back from a work trip and we managed to catch up to her on the Interstate, which you can see in the video below!

The double rainbow we spotted just as we crossed into Minnesota

After driving in the dark (and rain) through the Cities, we were very thankful to reach our comfy hotel room.

Our hotel was conveniently located just across the street from where I would be having my procedure. This is also where I had my last open heart surgery in 1999 and my original pacemaker implantation.

Taking the shuttle from our hotel to the downtown campus for a day of medical tests.

Hanging around waiting for the last appointment of the day.

My sister even was able to get some work done!

After a long day, we were able to eat at our favorite restaurant in Rochester!

Me after my procedure...I was just a tad groggy!

Grateful that things went so well!

After a night in the hospital and an extra day recovering, we were ready to hit the road again!











Who is that ahead of us on the Interstate? Let's find out!     


Tired but happy sisters reunited in Bismarck!

Grandma is there too, and Faith is super excited to have us all there!

Hopefully it will be awhile before I need to go to Mayo again for a medical procedure. If I do though, I know God will provide and Faith will be well looked after!

Sunday, November 1, 2020

October: A Memorable Month and Birthday

Oh. My. Goodness. What a month! It's certainly been challenging, but thankfully there were a few bright spots to help us through. At the very end of September, both Faith and I came down with colds. They would not go away! Faith was really stuffed up and seemed pretty miserable. I thought she might have a sinus infection so I took her to the walk-in clinic. Although I didn't think we had COVID, I asked to be tested just to help give me a peace of mind. 

They only had the nose swab available. I was nervous about it being traumatizing for Faith. As we waited for the nurse to come back in the examination room with the test, I prayed for Faith that she wouldn't have a tough time. I should have remembered to pray for myself! 

I told Faith I would go first so she would know what to expect. When they stuck the swab way up my nose, I nearly started crying. It gave me flashbacks to when the breathing tubes got pulled out of my nose following open heart surgery. It was sort of the same icky, awful feeling.

Next, it was Faith's turn. The nurse was fully expecting Faith to fight the swab going up her nose. She held Faith's hands while I held her head in place. The lab technician put the swab up Faith's first nostril and I counted to 10. The lab technician did the other nostril, and I counted to 10 again. She didn't try to fight it or anything. She was so brave and didn't even cry! I was very proud of her! I told everyone afterward that she had done better than me. 

My brave girl!

It took four days for the test results to come back, both of which were negative. Faith did have a sinus infection so she began a round of antibiotics. It took her about six days of being on the meds before she finally started feeling better. 

A couple of weeks after she was finally better, I had to take her in to get the Mic-key button for her feeding tube replaced. When we had tried to put in a new button at home, we found out it was defective. Thankfully we had a second one, but that one was defective as well! We ended up having to put her old one back in. Because of this, the skin around her stoma became very red and sore. When I took her to the surgeon, she told me it wasn't infected, but there was granulation tissue that was beginning to form. She replaced it without any problem and prescribed an ointment for her skin.

During all of this, I was busy trying to finish raising funds for our new van. I really wanted to raise enough so we could get it for Faith's birthday. Amazingly, we ended up raising about $25,000!!! I am also applying for funds to help cover the conversion cost of the van. I will do a separate post about the van, but long story short, my brother Todd found one for us at Cummings Mobility and had it delivered to our front door 2 days before Faith's birthday!

Thanks to all the donations, New Wheels for Faith became a reality!

While preparing for the van delivery and Faith's birthday, I found out Bismarck was supposed to get our first major snow storm. I was concerned the snow was going to deter our birthday plans. Thank goodness we only ended up getting about an inch of snow but it did dip down to about 14 degrees F.

Even though the weather cooperated, the elevator in our building did not. Two days after I had taken Faith to get her button replaced, the elevator went out. Needless to say, I was pretty devastated. Without a working elevator we would not be able to get Faith downstairs to see her new van when it arrived. We also wouldn't be driving around to see her family and friends on her birthday. (A pandemic-friendly birthday plan I had come up with).

The van was still delivered, but instead of being able to get inside, Faith could only watch out the window when it arrived in the parking lot. We tried to make the best of things and had a tiny party in our apartment with cake and ice cream. For her birthday weekend, she did video chats and phone calls with some of her best friends and other family members. 

Happy 17th Birthday!

Faith with Grandma and Grandpa 



Faith's cousin and favorite dog even came to the party!


Faith's beautiful birthday flowers!

We went through the rest of the week with no elevator, and it is not supposed to be fixed until Monday or Tuesday. I have been in contact with our building manager and even the regional property manager. I think they are finally beginning to realize that we are in need of a new elevator! 

Despite some of the challenges and disappointments, my heart is filled with gratitude. I am so thankful for our van. I promise to do another blog post as soon as Faith is able to get downstairs and we go for a spin! I'm also thankful to the friends and family who have supported us during this challenging month and also for the many prayers. 

If nothing else, Faith's 17th birthday was definitely a very memorable one!

Thursday, February 7, 2019

CHD Awareness Week: My Heart Story (So Far)


Grandma Dorothy holding me at 5 months of age
In February, 1974 when my mom took me home from the hospital, she thought she had a perfectly healthy baby. But when her mom came for a visit five weeks later to see her granddaughter, she asked why my lips looked discolored. Grandma Dorothy also noticed I slept a lot, even for a newborn. Mom assured Grandma she would ask the doctor about it during my six-week checkup.

Mom took me to the same clinic in Wolf Point, Montana, where I had been born. She and Dad were living in a tiny town called Luster, where Dad worked as a ranch hand. My regular pediatrician was unavailable. A young doctor, fresh out of medical school, examined me instead. Dr. Mattley quickly agreed the bluish tint to my lips was disconcerting and because of it dubbed me a blue baby. “Her body isn’t getting enough oxygen, which is why her lips and fingernails are cyanotic,” he said.

He also detected a heart murmur. An X-ray confirmed a possible heart defect. Following the examination, Dr. Mattley called the clinic in Great Falls, which employed the closest pediatric cardiologist in Montana, 300 miles away.

At the age of three months, I had my first electrocardiogram. I also had a second set of X-rays. The cardiologist admitted to my parents that he wasn’t sure what he was seeing. “There’s nothing we can do at this time. We’ll just have to wait and see. She most likely will need to have heart surgery someday.”

There was no Internet or access to medical information for doing research. My parents had no other alternative than to believe I would survive long enough to have surgery.

When I was four months old, my parents moved back to their hometown in North Dakota. Mom heard about a pediatric cardiologist in Bismarck and my parents took me there in June.

Dr. Katrapu had ordered another round of X-rays, an electrocardiogram, and blood work. “It is possible she has a hole in her heart,” he told them. “This is common for babies. A simple surgery should take care of it.” He went on to explain that a diagnostic test called a heart catheterization would show any anomalies in my heart. “Unfortunately, we can’t do the test here in Bismarck. The closest place is the University of Minnesota Hospital in St. Paul.”

At six months old, I weighed only twelve pounds. My lips and fingernails were getting more cyanotic by the day. I slept most of the time. Drinking from my bottle completely wore me out. My appointment in Minnesota could not come fast enough.

In August, Mom and Dad loaded up their Ford Galaxy (with no air conditioning) to make the 600-mile trip to Minneapolis–Saint Paul. They set out from home on Grandpa Lawlar’s farm twenty miles north of Watford City to a place completely foreign to them. Dad drove down the highway and then on the Interstate with Mom sitting on the passenger side and me lying on a blanket between them, which was completely legal at the time. Not having me restrained in a car seat made it much easier to feed and change me during the twelve-hour drive. The biggest city they had ever visited was Fargo, where Dad had gone to college. They were completely overwhelmed by the size of the Twin Cities but somehow managed to find the hospital.

My parents met with four different doctors, including Dr. Bessinger, the pediatric cardiologist. Following the usual tests, a nurse carefully placed me on a large gurney, making me look much smaller than I was. In response to the panicked looks on my parents’ faces, the doctors assured them the routine heart catheterization would take only a couple of hours. They explained they needed to locate the hole so they could operate the next day. I had been gone for over three hours when Mom and Dad, stuck in the waiting room, started to get anxious. Finally, five hours after my parents had last seen me, Dr. Bessinger gave them the grim news.

He told them I did have a hole in my heart, but I also had much more going on than originally suspected. An exact diagnosis could not be determined. The doctor explained to my parents how a normal heart has four chambers but only three of mine were fully functioning. He also said I had some blockage to one of the main arteries attached to my right ventricle. I would need to have a shunt placed between my pulmonary artery and aorta, allowing more oxygen to flow through my body. Without the shunt, I would eventually suffocate to death. He warned my parents it would not be a permanent fix. As I grew older, I would have to get another one placed. My parents were informed that my particular heart defect was rare and the prognosis was uncertain. Even with the shunts, I might not live to see my twenties.

Following my surgery the next day, the doctor asked a nurse to take my parents to the Intensive Care Unit to see me. The surgeons had opened me up on the left side of my body. Along with several IVs, I had a tube down my throat and a big machine near my bed pumping oxygen into my body. As the machine pumped, they could see my little chest move up and down. Though tubes, lines, and bandages obscured much of my body, Mom did notice my lips were not as blue. Dad, completely unprepared for what I would look like, nearly passed out when he saw me. Fortunately, a nurse standing close by steadied his wavering body. As they stood over me, nurses came in to draw blood from my heel every ten minutes.

A couple of days later, the doctors discharged me from the ICU and moved me to the pediatric floor. Mom and Dad did not have enough money to stay in the Twin Cities during my entire hospital stay. They were forced to leave me in the hospital and make the long drive back home. The only thing connecting them to me was the daily long-distance phone calls to the nurses. The nurses always reassured my parents if anything ever changed someone would get in touch with them. Four weeks later, the one phone call they had been waiting for finally came.

Dad had just walked inside from milking cows. “They called and said we could come and get Cari,” Mom told him.

They dropped my brother off at Grandma and Grandpa’s, just down the road, and drove all night to be reunited with their baby. When they reached the hospital twelve hours later, they were relieved to see that I looked like a normal, healthy baby. My pinkish skin plus the weight I had gained nearly shocked Mom. “It’s hard to believe this is the same baby,” she quietly remarked to Dad.

They stood there for several minutes watching me kick my legs around in the crib, marveling at the amount of energy I had. Within hours I was discharged and Mom and Dad were back on the road bringing me home.

Celebrating my 45th Birthday with my daughter!
Four years after my first surgery, I had another one, and then at 10 my Fontan. In between surgeries I had been officially diagnosed with Double Outlet Right Ventricle (DORV). Unfortunately, at that time, the doctors believed that my Fontan cured my heart defect. There just wasn't enough research to tell them otherwise. When I was 19 years old, I was hospitalized with congestive heart failure. I never fully recovered, which is why in 1999 at the age of 25, I needed to undergo my fourth open heart surgery. Three months later, I had a pacemaker implanted. 

I am beyond grateful for the wonderful medical care I have received through the years, and that despite what doctors said, I was able to have a child. My daughter, Faith is the most wonderful gift the Lord could have ever given me. 
 
About 5 months after I had my daughter, I needed to go back to the Mayo Clinic to get my pacemaker battery replaced. Because my heart  relied so heavily on my pacemaker, the battery didn't last as long as they normally do. This meant I had to get my battery changed about every 4 to 5 years. Eventually, as my original lead began to fail, I needed to get the battery replaced every 2 to 3 years. Finally, in 2021, my cardiology team thought it might be time to put a new lead in. They hoped by doing so, it would increase my battery life. 
 
I just had that procedure last June. I was so blessed my sister, Tesa could drive me to Rochester and look after me. I had the support of many family and friends, some of whom took turns looking after Faith while I was away. Even though I had some restrictions following the procedure, it was nothing like getting the original pacemaker! 
 
Despite how well I'm doing, it's hard to know what the future will bring. There are not that many people with double outlet right ventricle in their late 40's! I only know that I will continue to look after myself the best I can and keep up with all my cardiology appointments. The rest is in God's hands!  
 
By the way, to celebrate Congenital Heart Defect Awareness Week, I am raising funds for the Adult Congenital Heart Association. I am doing so to raise awareness for the fact that many adults born with congenital heart defects think their surgeries have "cured" them. This is not true, however, as most people born with congenital heart defects will need medical care for the rest of their life. Other adults with congenital heart defects fall through the cracks between pediatric and adult care. The ACHA helps adults find specialized cardiologists that treat adults born with congenital heart defects. In so doing, this organization improves the quality of life and helps extend the lives of adults with CHD. Please feel free to make a donation!