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“Until Vincent was diagnosed, sick is all we knew.”

This post was submitted to Children’s Miracle Network Hospitals by Amanda Bacon for our By Real Moms series. You can follow Amanda on Facebook. Submit your own story here. Watch Real Moms here or join the Real Moms group on Facebook to see and share more stories of parenthood.

We all have dreams for our future, the future of our children… All those thoughts and dreams you have built up can all change with one sentence. Everything you had planned all takes the backseat while your family comes together and battles the newfound challenges head-on. That day came for us early September in 2013 when our beautiful 7-year-old Vincent’s body was too tired to fight on his own anymore. That was the day we came together to navigate our “new normal” as a family. What was our “new normal?” I think scared is an understatement. Me? I wanted knowledge, I needed to understand what was to come!

First off, I had never heard of this disease, my husband and I had to become experts and educate ourselves. If you knew me you would understand, I am a bit of a control freak and need to know as much as I possibly can. I also have always loved to teach people to be their own advocate and always continue to learn and grow. I was going to be my son’s health advocate and figure out what will help him live a fulfilled life as healthy as possible, to have goals and achieve those goals and never stop working hard each day, no matter how hard it seems.

In our world healthy just means not being “sick”. We use this word “sick” pretty loosely in our household. Until Vincent was diagnosed, sick is all we knew. We had battled and saw specialist after specialist to figure out why my baby was so ill all the time. Every doctor we saw said he had allergies, to literally everything, food, soap, outdoors, you name it. He was malnourished, doing breathing treatments due to lung damage. He basically had no immune system and this beautiful baby boy fought to breathe and yet no one could tell me what was wrong. Looking back I don’t know how I worked full time and had this very very sick baby, knowing what I know now is so obvious. When he was just a few months old Vinny was diagnosed with RSV (respiratory syncytial virus) and I had never in my life seen something so tiny, fight so hard. We almost lost him to this disease, at it’s worst I remember living in the pediatric ICU getting only a few winks a sleep a night. It was always worse at night. He was hooked up to every machine you could imagine, it was absolutely heartbreaking. That day that always sticks in my head is the day the chaplain came in and baptized Vincent and read him his last rights. I will never forget the pain and the hope I had to see my little boy get through this. We needed a miracle.

The next day he continued to fight like a boss and I witnessed that miracle happen. A few weeks later we were headed home thinking his fight was over and this had been the issue the whole time. Boy, was I wrong! We will spend the next 7 years trying to pinpoint what is going on and what we can do to intervene. Vincent will go on to be hospitalized up to 37 times in one year and being totally malnourished and only weighing 24 pounds at 7 before we got our answer. No one could figure out what was going on. Those next few weeks would speed by as we crammed knowledge and learned how to navigate our new normal. What this disease truly means for our son and his daily life, we were not prepared.

In late August 6 years ago we got our answer. My son has cystic fibrosis, pancreatic insufficiency and failure to thrive. It was a blessing to have an answer but at that very moment, so many lives changed. Now instead of fighting an uphill battle to not be sick, we can treat the symptoms and hopefully prevent further damage. It’s scary to find out how much damage Vincent’s little body has endured, I will tell you first hand it’s a lot to take in. It’s a lot of responsibility but when your child is sick, instinct kicks in and you own this. This is my only job! I immediately started my research, I dug deep. I learned everything! The first thing was first we needed to look at the new equipment and medication and figure out if they will pay and if so how much. That was interesting but in no way, shape or form fun. We found out quickly despite having one of the best insurances there are things that won’t qualify and you have to fight and write letters, so many letters. Ask different foundations for help and working out the new obstacles to get them to my son.

I stopped working full time and started working part-time so I can get everything done with Vinny, one thing that changed our lives was switching from hand percussion to our new vest. We could have never afforded to get it so quickly if it wasn’t for Children’s Miracle Network Hospitals, which I had volunteered and done so many toy drives for years in a row and adored the opportunity. That was always my favorite time of year, taking Santa with toys to deliver to the children’s floor. Well sometimes those good deeds do not go unseen and they introduced us to the CMN Hospitals family. I love sharing the story of how they helped us get this life-changing treatment and continue to help our family. That vest literally changed my life and my hand pain!

We work as a family unit every day and most sleepless nights to help him fight this disease and trying to keep him able to fight. Vinny takes enzymes with all food to aid in digestion as his pancreas does not work. He takes up to 100 enzymes a day and requires an upwards of 10,000 calories per day. We have recently started doing overnight feedings through his g-tube to help us reach that goal. He also takes about 20 other pills to help multiple functions and help keep his bones strong, sometimes taking up over 150 pills per day total. People who have cf tend to have weak bones from the body being malnourished for so long.

He does 3 hours of percussion treatment to help break up mucus and also doing multiple hours of breathing treatments to help open airways and push mucus out. As you can imagine how it can get overwhelming and boring for a growing boy, we always try to make these times fun. He loves art and is an amazing aspiring comic book artist, we have spent so many hours creating masterpieces and making these memories! We are always looking for things to keep his attitude positive and not think of this as a burden. When we do have extended stays in the hospital we do projects like drawing cards for other patients and nurses, arts and crafts and one time even got to paint a ceiling tile to go on the pediatric floor. It is awesome to see it every time we go back. Vinny always makes quite an impression on staff so he gets lots of visitors.

I have always told him that everybody has something and this is just his something. It shows in his everyday attitude that he appreciates these treatments and knows the more on track he stays the fewer hospital visits we have. It’s hard for him to see his friends doing things and him having to stay home to get treatments done. He is the most outgoing, caring and generous human being I know and I am so proud of him every day. He is truly a warrior.

Cystic fibrosis (CF) is a genetic disease that has no cure. Cystic fibrosis causes a thick mucus to build up in the lungs, pancreas, liver, and intestine. This can cause inflammation and damage, leading to scarring (fibrosis). The buildup of mucus can block the airways and create an ideal environment for bacteria to grow. This can result in frequent chest infections that can cause high fevers and usually resulting in a hospital stay for 2 weeks. We call this a “tune-up”, Vinny usually requires this tune-up several times a year. Chest infections are normal for him, these infections do not respond to standard antibiotics, a bacteria called Pseudomonas is a tricky superbug that sticks in his lungs all the time. The mucus alters the environment in the intestines, restricting the activity of digestive enzymes, preventing food from being properly broken down and absorbed, especially fat and proteins. Puberty is generally delayed and infertility is a common problem. You know, explaining this disease is so incredibly hard. Harder than I thought it would be.

I will tell you we have an amazing care team we see every three months and we take every day as it is and change life accordingly. Enough about the disease and let’s talk about Vincent and how he does not let this disease hold him back.

Vinny was born on November 17, 2006, two weeks earlier than expected. I went in for my weekly checkup, see Vinny was a lazy baby when he was still growing in my belly. I was considered high risk because he was so small and didn’t like to move around much. I remember going in and they would hook me up to a fetal heart monitor and leave me in there for what seemed like hours. This day the doctor came in and said: “you ready to do this?” I was ready to go but first I needed my go-bag. She agreed to meet me at the hospital in 2 hours, which was nice since I was not in labor and didn’t want to come home to a dirty house. This makes me laugh now, 13 years later and way more lax on my house chores. So, I head home to grab my bag and do a few last-minute things. Once home I found myself cleaning and remaking my new baby’s bed and making sure I grab any preemie clothes I have. I knew he would be little being born 2 weeks early, I mostly worried about his lung development. But, I took a moment to sit and imagine the little human in my belly actually being in my arms. Then the phone rang, crap it was my doctor’s office, I laughed to myself. Time to have a baby!

I got to the hospital no more than 30 minutes later, I am shaking with excitement and fear; so many different emotions. I have waited for this moment for what seems like an eternity!

I remember always asking my doctor, “how will I know if I am in labor?” She would always answer “you will know,” I tell you what, once they started inducing, I knew! Oh, I really knew!

At 1:37 am on November 17, Vinny met the world. He was so small, only weighing 5 pounds and 6 ounces but I had no idea how strong this little guy would be. Little Vincent checked out fine and two days later we were heading home to settle in our new life. Once we were home I started to see issues developing with him. He was struggling to breathe, it is so scary to watch your new baby struggle. He also dealt with tummy issues and was just a sick little boy. The hospital visits multiplied over the years but despite all that Vinny loves school, improv at a local college, drawing, reading, and being one of the national champions for Children’s Miracle Network Hospitals. He really enjoys volunteering and is always going out of his way to help others. He is always waiting to hold the door, offer help if you drop something and he will make sure to talk to you and get a smile. He is yes ma’am, no ma’am thank you and please. His manors are always shining, makes me one proud mom!

Vinny aspires to be a comic book artist for Marvel and has been a life long fan of Stan Lee, and more than anything Spider-Man. With a massive love for music and a larger love for skateboard, he spends a lot of time outside practicing or playing soccer or basketball with friends. He talks about what college will be like and what his backup plan is until he lands his dream job. When he puts his mind to something he really works hard to see it through, more recently finally keeping a clean-ish room.

I now am able to stay home when Vinny needs me and work when he is at school. A few years back my husband Matt encouraged me to stop working for someone else and start working for myself. He had faith and that made me believe I could do it. We did it together, I have now owned my own business for three years and I couldn’t imagine it any other way.

The best news of all is just last month we found out Vinny qualified for the new miracle drug. When we found out I cried the biggest tears of joy, this means more tomorrows; it means those dreams we have are still achievable. As I watch my beautiful baby grow into a wonderful man I take a lot of pictures and make every moment count. We are finally excited about the future!

This post was submitted to Children’s Miracle Network Hospitals by Amanda Bacon for our By Real Moms series. You can follow Amanda on Facebook. Submit your own story here. Watch Real Moms here or join the Real Moms group on Facebook to see and share more stories of parenthood.