The Harder Side of Caregiving
We have shared a lot of positive news with everyone regarding Cystic Fibrosis, including all the advances we see with CF and the extended life expectancy for our CF Fighters. We show the happy smiley Marlee and all the fun she has to bring some normalcy to our life. From preschool, dance class, friends' birthday parties, and everything in between, she is a rockstar. What we CF Parents and Caretakers don't often share is the pain and the struggle of being a CF Parent/Caretaker, especially when our babies are fighting the latest illness making its rounds.
Seeing your kiddos sick is hard enough, but as a CF Momma, it brings on a new stress level. We rely heavily on our Pediatrician and the partnership with her CF Care Team to prescribe her what she needs. Along with additional medication, we add additional treatment time to ensure we do what we can to help her body fight the illness. Then the worries of what bacteria she might be fighting set in, and is this truly the right antibiotic for our fighter? But what happens when these extra steps don't cut it, and she continues struggling? What do we do, where do we turn, and what is the best choice for our child? Do I call my CF Care team for more help? Am I being overly cautious, or maybe too dismissive? How do I hold my worry, concern, and swirling emotions in check to care for my daughter when I am on the edge of a breakdown myself?
Rewind a couple of months ago; Marlee started with a dry cough. This cough quickly overtook her and led to bouts of mucus-choking moments, followed by fevers and energy levels of nothing. She didn't want to leave her bed or the couch. The first round of antibiotics and additional treatments seemed to work, but then she went downhill again. After the second illness, Marlee started dealing with unbearable pain, leading to additional antibiotics and learning she had a ruptured ear drum. Again, additional meds were prescribed, and while the ear pain subsided, she didn’t return to full Marlee.
Fast forward to the last weekend in April. Our spunky girl is usually up and going and playing on Saturday mornings. However, this Saturday morning, she did not get out of bed. I messaged the nurse team and was told to start her on extra treatments. To be frank, I was tired of doing extra treatments because it was not working. The frustrated feelings and tears overtook me. I felt defeated, worn out, and at a loss. All I want is for my daughter is a life where she can get a cold, her immune system fights it, and she bounces back to a spunky four-year-old girl. Why does our girl have to endure illnesses for weeks on end? Why does she have to suffer? It is not fair to her. Following many texts and phone calls to my support team, I brought my emotions and nerves back in check and regained my focus on fighting for her. While Marlee is usually our superhero, it was my turn to be hers.
While no parent wants to admit their child to the hospital, this is what Marlee needed. We arrived at Children's Hospital on Saturday and were unsure what to expect. We had to check in with the ER, which was an adventure in itself and not one I want to relive. At one point, we were told if she didn't have CF, they would send us home because there was nothing they could do for us. I started questioning my efforts in getting her here. After five grueling hours in the Emergency Room and a 5-hour delayed discussion with the Pulmonologist, we were finally admitted to a room. Our little fighter was exhausted and was doing worse than when we arrived. Just before being assigned a room, they started Marlee on an IV antibiotic, administered every 8 hours. Shortly before bedtime, Marlee spiked a fever and was visibly dehydrated. They began fluids through her IV and a bolus, which could be considered a big shot of Powerade into her system. Nobody slept the first night or any night we were there, but we managed. Marlee started to perk up by Sunday afternoon, still receiving her antibiotics every 8 hours and treatments three times a day. We were told our stay could be anywhere from 7 to 9 days, but if she responded well, we could get out sooner. That Monday, our little girl was released to leave her room and go outside; however, we had to go straight outside and could not wander or participate in any hospital activities. As soon as we received that news outside, we went! We all needed the warmth of the sunshine and the fresh air more than we knew.
Fast forward to Wednesday morning, and we were at our witts end; we had had enough. The burnout and drain on our healthcare system workers is real, and it was felt during our time at Children's. We also realized the advancements in so many CF drugs have left hospital care teams out of practice with standard CF protocols. Our team of nurses were incredible, but there were a few significant hiccups that made us question her care and her health while there. We contacted our main CF Care Team and told them we needed to be released now. It was agreed upon through many conversations and planning for the weeks ahead that we could leave. By 6 PM that day, Marlee hoped on her new pink tricycle and rode her way out with her family following behind.
It was a long few days for us, my family was separated, and it was harder than I could have ever imagined. However, our village came together for us when we needed them most, and we made it work. We know hospitalizations are inevitable for our CF Fighters, but I hope this occurrence is few and far between.
So let's get back to some happy, positive news! The FDA recently approved Trikafta for those eligible CF Fighters between the ages of 2 and 5!!! It brought us to tears; this is a dream come true and what we have been waiting for! This has been considered a game-changing drug, and our sweet Marlee will begin taking it as soon as we can get it in our hands.
So as we embark on the beautiful month of May and enjoy the extra warmth of the sun, the budding trees, and flowers, it is important to acknowledge that May is Cystic Fibrosis Awareness month. In addition, it is important to acknowledge all those who help us continue our fight to keep adding more tomorrows for our CF Fighters. The generosity we see and is felt by so many is remarkable. You make this progress possible, and we are forever grateful to you.