The day Sam was born (June 2010), he was hanging out in my hospital room with us and he started to cough. I had never heard anything like it and wondered if there was something wrong with him. I asked the pediatrician at the hospital if he was ok and he told me that newborns just have some fluid in their lungs and have to cough it out. Sam being our fourth newborn, I knew the sound wasn't normal and pressed the issue with the doctor. He continued to spout off nonsense about how it was perfectly normal. He never actually heard Sam cough, but he didn't seem to believe my description of how bad it sounded. So was took our little lovee home and just hoped that it would go away. A couple months later, he came down with a cold. He sounded like he was going to die. I took him in to my pediatrician and told her about the horrible cough and how I had noticed it the day he was born, but now it was substantially worse with this cold. She gave him a breathing treatment in the office and sent us home with a little xopanex puffer and directions to have him sleep with a humidifier. The cough was so bad I was scared to have him out of my sight. Like gagging, spluttering, hacking-up-a-lung type sound. I set up a little "tent" in my room for him, consisting of his pack and play, a large blanket, and the humidifier inside the blanket. He slept in our room for over a week (and I DO NOT let my babies sleep in my room). I remember this as one of the most stressful, anxious times of my life. I know that sounds dramatic, but I was really scared for my new baby. I was actually scared he wouldn't make it through the night almost every night. I even missed my ten-year high school reunion because I was too scared to leave him. Eventually (like weeks later) he got better, but still had that lingering cough....
Every time Sam got even so much as a cold it was the same story. In addition to his cough, his little chest would just rattle when he breathed. When I put my hands on his chest I could feel the rattling. He had probably 5 X-rays before his 1 year birthday because he always sounded like he had pneumonia. The cough never completely went away when he was well either. By this point, he had also started randomly, violently spitting up his whole meal after I would nurse him, usually in the mornings. He would do this horrible cough where it looked like he was choking, then all the milk would come back out. He would also have what we called "night fits" where suddenly in the night he would cough so hard it seemed like he couldn't breathe and we would have to pick him up and pat him to calm him down so he could breathe again. Sometimes he would cough so hard he would throw up. Oh it was so scary!
I was bringing Sam to the doctor over and over and over. I started to feel like the paranoid mom who is always bringing her baby to the doctor, but there was something obviously wrong with my baby!! Everywhere I went, people would comment about Sam's cough and how it sounded so bad and I should get it checked out. Other mom's would give me dirty looks for allowing my sick baby to be around their kids. I had to explain a million times that he wasn't sick, he just sounds terrible and we don't know why.
When Sam was just over a year old I was getting really sick of the whole thing and I brought him in to the doctor when he was well and she finally heard his cough when he wasn't sick. This was the first time I felt like she really took me seriously. I told her it sounded to me like he didn't have enough room in his throat or something. So she sent him for another x-ray and then to an ENT to have his throat scoped. The ENT scoped his throat and said there was nothing wrong with his throat, but that he had thick fluid in his ears and should have tubes put in and his adenoids out. She thought maybe his adenoids were causing mucous to get stuck in his throat and causing his cough. So we took little man in for surgery and just kind of waited to see if it helped him at all. After a couple months it became obvious that the surgery hadn't helped with the cough at all. The surgery was at the end of August 2011. So Sam's pediatrician started treating him for GERD and put him on antacids. She also told me to treat him for allergies and prescribed allergy medication. Aaaaand she also gave him a nebulizer with more Xopanex. She told me to give him all of those things at the same time! I thought that was a dumb idea, so I gave them to him one at a time to try to see if we could isolate which one was working, if any. So for a month or so I gave him only the Antacid. It seemed to help with the throw up/spit up problem, but not the cough. Then I gave him only the allergy medicine for a month or so. It didn't really seem to help either. Myabe dried up his congestion a little, but still coughing. Xopanex didn't seem to help either. Nice.
Around the first of Decemeber 2011 my big boys got a very mild cold. One or two days of coughing and a couple more of stuffy noses. Done. Then my buddy Sam caught it. It just took hold of him. At Christmas all the family we visited with commented on how he sounded. By the end of January he wasn't better yet.
Then a little miracle happened. Our insurance changed so I didn't have to go through our PCP anymore (the doctor who had seen Sam 100 times). Suddenly I was able to pick any doctor I wanted. So I looked up a pulmonologist with Texas Children's hospital and took Sam in to him. His name is Dr. John Roberston. Houston friends, if you ever need a pulmonologist, he is a Godsend. He was so patient and sat with me for over 30 minutes asking me question after question after question. He took me seriously and actually believed me when I said I heard the cough the day he was born. For the first time I felt validated, like my Mother's instinct was right. Dr. Robertson told me that the cough could be a lot of things, but the key piece of information was that it was from the day he was born. He told me what he thought Sam's problem was and that we need to take Sam to Texas Children's and have a bronchoscopy. So on March 9 we took Sam down to the hospital and had the procedure. Dr. Robertson's diagnosis was right: tracheomalacia. So after seeing Sam ONCE, he knew exactly what was wrong with him. Because tracheomalacia can have a couple different causes, Sam needed a CAT scan to see if his was caused by a certain blood vessel that can pass in front of the trachea, smashing it. Dr. Robertson called down to see if they could get Sam in for a CAT scan right away since we were already there and they worked him in. The CAT scan showed that the blood vessel wasn't the cause. (I have to insert here how impressed I was with everything at TX children's. The staff was amazing and went out of their way in every way for us.) Here is Sam's trachea:
The funny thing is I was right all along. There WAS something wrong with him from day one. He DIDN'T have enough room to breathe. I just didn't know enough about anatomy (and neither did Sam's pediatrician... ) to know that I was right. I'm so glad I trusted my instincts and kept pushing for my little Sam.
So let me end with a picture of my sweet little Sam, for good measure:
