Chelsea

Tell us about Chelsea’s medical journey-

Chelsea is 35…yep, she’s an older (new tubie) Chelsea began her life as a Congenital Heart Warrior. She had many heart defects as a new born. She had 3 open heart surgeries by the age of 4. She struggled to gain weight for years, but after her 3rd open heart surgery, her weight began to stabilize as did her growth. One challenge was that she suffered a stroke at 10 months old during her 2nd open heart operation. Communication & learning became obstacles & sometimes a challenge for her. We attended years of speech, occupational, and physical therapy. We love our therapists and they helped us so much, especially Chelsea. Chelsea has continued to battle the Congenital Heart Disease fight. She battled many years with heart failure. Despite the challenges, Chelsea became an independent young woman-requiring just family guidance for safety & occasional help with some daily tasks.  Chelsea could feed herself, walk independently, ride a 3 wheeled bike, ride a horse with a spotter & and make decisions on what she wanted to do each day. Chelsea’s favorite things to eat were spaghetti, pizza, bread, tacos, fresh vegetables, fruit & potato chips (low sodium of course for her heart health) Her favorite treat was an occasional McDonald’s cheeseburger & french fries. Chelsea loved to work!! She was a very hard worker, too. 

COVID was a scary time for everyone, how did it affect your family?

Covid struck our world in 2020. Almost all of our immediate family are healthcare professionals. From the moment we heard Covid had come to our area, we took extra precautions to protect Chelsea. We knew eventually it would be hitting our family.  Sept 10, 2021 was a difficult day.  Chelsea was exposed to Covid 19 and her fragile health took a drastic turn. Her cardiologist wanted us to be admitted to the hospital and within 6 hours, Chelsea was critically ill showing signs that her body was struggling. Her lungs were failing to oxygenate her body, her liver was struggling, her heart was showing signs of weakening and her kidneys began to fail. Within a few hours she was on full life support and we were told she would never leave the ICU. Our family was devastated at first, then our faith became stronger. We believe that there is a God who rules and reigns over every part of our lives. We remembered that He had carried Chelsea for many years and wouldn’t leave her (or us) now. Chelsea’s body continued to fail. She required full respiratory support on a ventilator & special oxygenation with Nitrous oxide to assist her lungs. She had a fever of 104 degrees Fahrenheit. She was on multiple antibiotics, many other IV medications to support her blood pressure. She required kidney dialysis to help her body rid itself of waste because her kidneys stopped functioning. It seemed like everything was going the wrong way. Our hearts were breaking. Then Covid continued to wreck havoc on her fragile body & she began to have seizures. She was put purposely placed on a medication that caused her to be unable to move. Completely still. This was so foreign to our sweet girl. She remained in that state to “rest” as physicians did not want her to use any extra energy. This medically induced coma, “rest”,lasted for well over a week. We sat at her bedside 12-16 hours each day. (thankfully 2 parents were able to visit during this part of the pandemic) We talked to her, we read books to her, listened to her favorite music & tv shows. The only thing that hadn’t completely stopped was her hearing & we used that as much as we could.

Being in the ICU as a parent and nurse is double difficult-

The day came to wake Chelsea from her coma. The IV sedation was lowered and shut off. We all expected her to awaken with a bang! That didn’t happen. For days we got no response. All the medical devices continued to do their job, supporting her body. Chelsea remained at “rest”. As my husband and I listened to the chatter and conversations of the medical team-we already knew there was a huge problem. I failed to mention, my husband and I are both registered nurses- I am an ICU nurse with more than 20 years experience and my husband an ER nurse of 5 years  & an OR nurse in open heart surgery for the past 20 years. We have lived our lives caring for critically ill patients. That day changed dramatically-Chelsea had a CT and MRI of the brain ordered.  The tests were completed early in the morning. The results came back quickly (stat read by the Radiologist) The ICU physicians called for an urgent meeting with us. Our hearts were crushed, we expected the worst. As the physician read the results, “Chelsea has suffered an anoxic brain injury, related to her Covid 19 crisis and septic shock.” The physician went on to speak -all we heard was “think about terminating all life support measures, Chelsea will never wake up, or leave this ICU”. He went on to say she will never breathe on her own again, she will most likely never recognize you or interact with you again. The brain is damaged far too much. Crushed, heart broken, devastated were all words we felt immediately. There was a heavy weight on our chest. Our world just stopped.

Family and miracles-

Chelsea had a previous close call when she was 4 1/2. She was in ICU for a month and we were told similar things about her heart failing. Our minds couldn’t comprehend how she could this sick again. How had this happened?. We kept speaking to one another the things we both knew. We were with her almost continuously. She never coded, how did a virus have so much power? How did it take our sweet heart warrior’s fight? She wasn’t supposed to die to Covid! Her heart was her biggest challenge her entire life. Right now, her heart as we knew, was the strongest part of her frail body. The physicians wanted us to make a decision. We had to tell her three younger sisters the devastating update. The ICU director made special permission for her sisters to be able to come visit her in the ICU. They were allowing them one more visit to say goodbye to their sister, Chelsea. Within a few hours, her three sisters visited to say their goodbyes. Through lots of tears and sweet words spoken to their sister, they tried to make the visit last as long as they could. They dearly loved their oldest sister and had so many special memories with her. We all prayed together and they left the hospital. That evening, Chelsea’s vital signs stabilized. She seemed to be turning a corner. My husband and I watched in disbelief. Her blood pressure required less support. Her body was tolerating dialysis better. Her oxygenation improved a little bit each day. Everyday after, we told her physicians we were waiting to see how Chelsea did before we would make any decisions. Actually, we were watching God unfold His miracle on Chelsea’s life. Every detail wasn’t perfect or how we would have planned but it was His plan not ours.

ICU rollercoaster-

After 3 weeks in ICU we received another early morning phone call. The night nurse though Chelsea was in pain. She was watching her for a few hours and called the night attending to come assess Chelsea. She had spiked a high body temperature again-something Chelsea continued to do since her first diagnosis of Covid. This time, it seemed different. The physician ordered blood work and an abdominal x-ray. Chelsea was diagnosed with a bowel obstruction. She would need emergency surgery. We quickly arrived back at the hospital we had just left a few hours earlier. Chelsea looked miserable! Although we hadn’t noticed any of her typical personality since the brain injury, she looked to be in pain. She left later that afternoon for emergency surgery. The physician was incredibly knowledgeable. He was confident and reassuring to us. The surgery was only expected to take a few hours but turned into 6 long hours. Her sisters couldn’t be at the hospital because of the pandemics restrictions-so they waited in the parking lot in front of the hospital. They told us “they just wanted to be close…” Best sisters in the whole world in our biased opinion. The surgery ended 6 hours later. Chelsea had to have all of her large intestines removed, her appendix, and a small portion of her small intestine. Chelsea was given an irreversible ileostomy. We were thankful to be nurses, but in all honesty…we had no experience with ileostomy patients. We were soon on a learning curve.

Finally out of the ICU-

The weeks went on with bleeding issues, blood transfusions, respiratory infections, sepsis again. It seemed this nightmare would never end. On October 29, 2021, we were finally transferred from the “Covid MICU” to our local hospital LTACH unit. 8 very long weeks of life changing medical care filled with rollercoaster types of ups and downs. Chelsea finally was well enough to get an official PEG tube. Up until now she had been so unstable they either couldn’t feed her or were concerned she had an abdominal infection and couldn’t risk putting in a PEG. We were soon thankful for her to finally get a PEG. Soon after arriving at LTACH, Chelsea’s kidneys woke up and began functioning on their own. Chelsea was given a trach prior to her leaving the hospital and continued to work on weaning from the ventilator. On Dec 14th, 2021. Chelsea was discharged after 7 weeks in LTACH to our home. Although, even with a family of medical professionals, it was a bit scary. We are all experts now on her ventilator, G tube, ileostomy & whatever therapies or equipment she needs. Chelsea has made more progress in the last 3 years than her physicians can believe. Our heart warrior continues to fight and we continue to cheer her on with EVERY baby step she makes. 

What advise do you have for other families?

Our advice to other families would be to never give up! You guys are resilient! There are days when struggles will happen. Keep searching, keep asking, & keep learning along with your Tubie. Build a network of other friends & families that have tubes. There is so much we can learn from one another.  Stay positive! It’s a process but you can become an expert. 

Why do you love your FreeArm?

We are so incredibly thankful for our FreeArm Muscle!  Prior to using this amazing medical device we pictured Chelsea & our life a bit limited by requiring an IV pole to hold our pump and heavy bag of nourishment. We tried to think of ways to get around the challenge, but it was going to be a challenge. Chelsea’s sister, Makenzea researched Tubies and supplies. She came across the FreeArm Muscle and was a loving sister and bought one for Chelsea. We were wondering if it really could hold her heavy, adult filled bag and the first time we used it, we were skeptical. The FreeArm handled the job beautifully. It held her bag without any problems. We have been using the same FreeArm for over 3 years! We use our FreeArm for every trip, day or night. We have taken it to the beach, baseball games, zoos, aquariums, shopping, out to dinner & we have gone on hikes through the mountains and walks in our neighborhood. All without worrying about keeping on her feeding schedule. With our FreeArm we feel pretty limitless. Chelsea enjoys to be part of all our family outings and enjoys getting out to socialize with others. 

Thank you FreeArm for improving Chelsea’s life and giving us the ability to make memories!!

The Briggs Family 
Canton, OH ~U.S.A.