Cerebral Palsy, Medical, Personal, , , , , ,

Scarred Lungs in a Pandemic

I’ll be the first to admit, I am afraid of the world we live in today. I think it is safe to say that seems to be the general consensus of my generation. I am fortunate enough to be a stay-at-home mom. My primary job, goal, and function is to raise my son to be the best version of himself.

Mark is considered to be immunosuppressed or immunocompromised. When he came home from the hospital, we were in the midst of RSV Season. This means we were quarantined before The Great Pandemic of 2020. We only really allowed certain guests to come around and a lot of the rules we had in the NICU were still enforced at our house. Needless to say, it got lonely after a while.

The longer a child grows in a mother’s womb, the stronger the child gets. They have room in the womb to move around, working their muscles. As amniotic fluid rushes in their mouth, it fills up their lungs and strengthening their diaphragm. Their diaphragm allows the lungs to fill and release the fluid. A preemie is not always so lucky. The lungs are considered to be “fully developed” at 37 weeks gestation. For someone who was born at 27 weeks gestation, this means the lungs were not capable of functioning on their own.

In the NICU, Mark spent just over a month and a half on a vent(illator). When they were able to wean his oxygen down, his body would become tired very quickly. His gas exchange wouldn’t be where they needed it to be to continue to wean him off the oxygen. They would have to increase the flow and he would be on it for a while longer. This sounds like a very “play it safe” and unharmful course of action.

From the outside looking in, I thought it was okay for him to be on the vent as long as he was. He was getting oxygen. He was breathing. I watched his chest rise and fall. It was working or so I thought. I watched the oscillator shake his chest violently, not realizing that his lungs were slowly becoming dependent on the machine. His lung tissue was being replaced with scar tissue. This would only cause more issues than just a fever and a cough if were to catch the flu or RSV. Mark was quickly diagnosed with Bronchopulmonary Dysplasia (BPD).

Once a month, every month since he came home from the hospital, Mark was given a shot of a medication, a vaccine called Synagis, to prevent him from getting RSV. This medication was crucial to his overall health. A baby with healthy lungs and a healthy immune system would likely develop a cough, a fever, and other cold-like symptoms. In a child with BPD and lung disease, it can cause pneumonia or even death. This medication was necessary.

We received our first bill from the specialty pharmacy. It turns out the medication was not covered through our insurance. We received a bill of $9,646.42 for three vials of this medication for Mark. Please tell me that I am not the only one who feels this is an insane amount of money.

We kept Mark pretty… isolated for the first year of his life. There weren’t many visitors other than family and select friends. We didn’t go out to restaurants and we didn’t visit family members at their houses. We were made to feel guilty about so many things, or not attending certain events. To limit exposure during certain events, I would almost time our departure in line with when Mark needed to eat or sleep. This meant accidentally “forgetting” a bottle of milk or his medicine at the house. Of course, I later got backlash for that. I was called a “sorry mother” and an awful one at that. We will talk about that another time.

Toward the latter half of 2019, we were going out more and having playdates. I was fortunate enough to make new friends and reconnect with old ones, who also have children Mark’s age. We spent our days exploring museums, lunch out on the bayfront, play dates at friend’s houses. We were finding our stride to our newfound freedom. Mark was becoming more social and interacting with others, as social and interactive as a 1 and a half-year-old could be.

For me, it was invigorating. I was finding myself again. I felt human again. I had mom friends! My conversations weren’t limited to family and therapists, and doctors- but to people outside of our immediate care team! It was a relief from the strict schedule and loneliness I was experiencing.

Then it all changed.

When the Great Pandemic of 2020 hit (aka COVID-19), we were pretty well adjusted to the quarantine and isolation aspect of the virus. The issue we suffered from the most was how to ensure Mark received the care he needed. After all, he had a lung condition and the lungs are the target of COVID-19. We were told that if Mark were to get this virus, he would immediately be sedated and intubated and to prepare for a long hospital stay. The expensive RSV vaccine wouldn’t protect him. The nebulizer wouldn’t help. The virus sent the world and our family into a panic.

As some may know, the longer you (or anyone) is on a ventilator, the more difficult it is to wean you off. In retrospect, the longer you are on it, the less likely you will be able to come off of it. Knowing that this virus could put Mark’s life at risk once again, simply by being on the ventilator terrified me. It also worried me that people on vents were still dying because of how the virus attacks the lungs.

I felt a sense of relief when the mask mandates came out. I felt like our world leaders at the time were taking an interest in our health and well-being. I felt like this decision directly impacted the virus’s ability or inability to spread- less likely to infect Mark. I felt hopeful and truly believed that we could and would make it through this quickly.

Then it became political.

I went to school for Public Health. It is what my degree is. It is the field I worked in. I had plans to earn my Master’s degree and become an Epidemiologist. Of course, this was before I had Mark. There are a lot of people working tirelessly behind the scenes. It is a demanding career field and hasn’t gotten much appreciation in recent years. I hope COVID-19 has opened the eyes of the public to those who work in this field.

When I would wear a mask, I was judged for doing so. In return, I am guilty of silently judging those who chose NOT to wear a mask. I felt offended, bothered, and like those people were only caring about themselves. Thoughts trailed one another in my mind the way the subway does in NYC- one after another and another. Not all of them were good thoughts either. “How dare they be so inconsiderate? Don’t they know I have an immunocompromised child at home?”, “Why are you so selfish?”

Was I wrong to think these things? No. My thoughts are my own and I am allowed to have those thoughts. Was I wrong for saying some of these things out loud? Absolutely. Mark is obviously, my world. My life, my world, revolves around him. The same cannot be said for everyone else. There are billions of people on this planet and just about all of them have no idea who I am- and they don’t care if I have a medically complex child. It just isn’t relevant to them and that is okay. That is their right to feel that way. The same could be said in reverse.

That isn’t who I am though. Regardless of what side of the coin you’re on, pro-mask or anti-mask, pro-vaccine or anti-vaccine, I think we can all agree that COVID-19 changed our world and how we saw one another. You can see how it split our country into two teams and you can see where that caused issues on a greater scale. You can also see how it brought our country together. Neighbors were checking on neighbors and buying supplies for one another. In a time that required we isolate ourselves, it managed to bring families together in ways that just 100 years ago, we didn’t think was possible (thanks Zoom)!

For us personally, Mark and I spent more time outside. We spent hours upon hours outside together. We went for walks, had picnics, collected rocks, and leaves. We explored our world in a new way that gave us both so much enjoyment. The pandemic closed down our therapy office for a month and so we found new ways to reach Physical Therapy and Occupational Therapy goals. We found a way to incorporate our world, nature, into an enriching learning activity. It gave us plenty of time to bond and between you and me, I think it almost made up for the time lost in the NICU.

I never thought I would live through a pandemic such as COVID-19. Then again, I never thought I would live through something like 9/11 either. I definitely didn’t want Mark to endure something like this and I do believe there will be consequences of our actions when it comes to isolation. As for now, I am making sure Mark is getting out there and enjoying the world as it opens back up once again. He is still out there exploring and he’s making friendships that will (hopefully) last a lifetime.