This is the second post to fill in the details on what happened with Andrew’s emergency lung surgery last month. You can read the introductory post here.
One Saturday night, my husband and I both woke up hearing our 5 week old baby boy sneezing and coughing. We both groaned. He had picked up Isabelle’s cold! But babies get colds all the time. I reminded Damian that Isabelle was this age when she got her first cold, so we already knew what remedies to try.
The following Wednesday evening, while we were eating at the Olive Garden, Andrew was steadily coughing, but at the end of each series of coughs, he would breathe in really strangely. I’d never heard anything like that. I still wasn’t too concerned because it was just a cold, and I knew how to handle a cold: steam him up in the shower, run a cool mist humidifier, use saline solution in his nose, suck out his nose frequently, and elevate the head of his bassinet to help with drainage. I’d been doing these things for several days, so I should see an improvement in the next day.
But my husband was incredibly concerned and insisted we take the baby to the ER. And I had to admit, his cough was pretty funky. I could also see some indrawing at his ribcage. That was definitely not a good sign. After dinner, we passed by the pediatric after hours clinic, but they had stopped seeing patients 15 minutes before our arrival. So around 9 pm that Wednesday night, I brought Andrew to the ER.
The nurses who initially checked him out were not concerned at all, and they asked if we’d spoken to our pediatrician’s on-call doctor. No, I hadn’t thought to do that. Nonetheless, we were sent back to a room, and eventually X-rays were ordered, just in case he had pneumonia.
Around midnight, the ER doc walked in with the X-ray results. He said Andrew’s lungs looked abnormal and he wanted to get a CAT scan to be sure. He thought he saw cysts, but it was hard to tell. It appeared that Andrew had something congenitally wrong with his lungs. My heart sank at his words. Those were life-changing words, and I felt quite a bit of fear. I was trying to remain calm, but evidently I don’t have a poker face, because the doctor repeatedly told me not to freak out. The doctor told me it could be something minor, but we’d need to get a CAT scan to see.
I called Damian, who was home with Isabelle, and I also texted a couple of friends to pray (it was midnight, so I notified few people). One friend, Melissa, offered to stay at our house so that Damian could join me at the hospital. We went back for the CAT scan and awaited the results. While we waited, Andrew had a couple of really scary coughing fits where he seemed completely unable to breathe at times. The nurses put him on a bit of oxygen. We were also informed that Andrew had tested postive for RSV, so it was definitely more than your typical cold, but it was the lung defect that was really causing the breathing problems. Eventually, around 2:30 in the morning, the ER doctor told us the results.
He informed us that Andrew has Congenital Lobar Emphysema. His lungs could take air in, but they could not remove it easily. The top lobe on his left lung was ballooning up with air and was so large that his trachea and heart were displaced into the right portion of his chest. Treatment was available, but not at our hospital. We would be flown to a children’s hospital in either Little Rock, AR or Dallas, TX. I would fly with the baby and Damian would go in the car so we’d have a way home. Oddly enough, I found out later that he made the diagnosis using WebMD. Seriously. It’s such a rare condition that many doctors have not heard of it.
We chose to go to Dallas for treatment, since my oldest sister lives there, and I then left to pack a bag for myself and one for Isabelle. We had no idea what treatment options were available or how long we’d be gone, so I was trying to prepare for everything. I was quite scared, knowing my son had a lung defect, but I honestly had no idea just how dire the situation was. Since we first walked into the hospital, we never felt like anything about our case was urgent.
At home, I started yanking clothes out of laundry baskets, drawers, and closets, just throwing them in the suitcase. My friend, Melissa, took everything out and neatly folded them for me. I remember telling her how I felt, that this just wasn’t how things were supposed to go when you have a newborn. It’s supposed to be a sweet time, not a scary time. Right? And I immediately thought of our friend who is battling colon cancer. She has a 4 year old and a 1 year old. This isn’t how they pictured their life either, is it? But this is it. My 6 week old has a lung defect and Holly has cancer. And none of it was a surprise to God. None of this is outside of His hands either. I trusted His plan for us.
I made arrangements for Isabelle to stay with Melissa in the morning, but they were leaving town on Friday. I never really worried about where she would stay, because I knew friends would offer to keep her. I got in the car and headed back to the hospital, where Damian and Andrew were waiting for the plane and EMTs to arrive from Dallas.