The PPHN baby and illnesses

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So you have probably heard that my youngest was born and diagnosed with PPHN or more commonly known as pulmonary hypertension. My son is 3 months old now and for the most part, he does pretty well. He does have off days where his oxygen isn't so great, sometimes he gasps for air and those are the days where I mostly cry silently thinking I am about to lose him. But he does have some good days as well.

Recently my son became very ill with his first sickness. :( A couple weeks ago, two of my other kids came down with croup for the first time ever which was hard enough dealing with. However, then my youngest got really sick. He was running fevers every day, coughing and wheezing, gasping for air more than he'd ever done before. He wasn't really eating and wasn't gaining weight either. So I finally got him into his dr and was shocked to hear he had RSV. I'd never had a child with RSV before and the very thought of my PPHN baby getting it only heightened my fears that he was going to die. Imagine my surprise when the dr told me just to take him home and watch him. I was furious! After talking to my best friend, who'd just been through this with her daughter that is 2 days younger than my son, I began to understand a little bit better why they didn't want to do anything unless he got really bad. But it still scared me. I'd always heard that babies with RSV needed to be hospitalized because it is such a dangerous illness. So why would they take that chance with my baby when he ALREADY has issues breathing and has a heart defect? It was so frustrating watching my baby struggle through sickness and just to be told there was nothing they could do yet for it. I didn't want to wait till my baby got so severely ill that he could die. 

Fast forward to two weeks later, he'd started to slowly get better. Then, he took a turn for the worse once again. He started running fevers and his coughing got much worse. So we rushed him to the ER after first taking him to an immediate medical care center because they didn't feel comfortable seeing him with his PPHN disease. After hours of being monitored, watching him get poked 4-5 times to get blood samples which kept clotting too fast and a chest x ray, we were discharged with no answers. His RSV had cleared up, his lungs were clear and since they couldn't get his blood tested, they had no way of knowing exactly what it was. But they just assumed it was viral. It was kind of a relief but at the same time, it infuriated me even more. Since I have never dealt with a baby with this kind of disease, everything is so new and scary to me. I assumed the drs would be taking better precautions and erring on the safe side by doing more than what they have so far. Especially seeing how much his oxygen kept dipping the entire time he was monitored in the hospital. It was terrifying bringing him back home. I didn't sleep much because every time he woke up coughing and gasping for air, I thought he was going to just stop breathing completely and wanted to prepare to call for an ambulance if necessary. In just the last couple days, he's started to get better again and I finally find myself starting to relax a little more. 

I don't think I have ever been more scared in my life. Every day, I find myself having flash backs to right after he was born when he struggled so much to breathe and we thought we were going to lose him.  And since PPHN is something that is kind of rare, it's not like I find much support through these difficult times to know what is worrisome and what's considered "normal" for babies with this disease. I feel like I am completely alone in this and I don't know how I'll survive the next several years with him and illnesses because I just barely got through his first one. What I have read seems to suggest that it's extremely dangerous for babies with this disease to deal with illnesses because their bodies are already fighting to work hard enough to pump blood flow and be able to breathe right without viruses and bacteria attacking their bodies as well. I think what scares me the most is not knowing what is to come with him. When he was hospitalized in the NICU, the original prognosis wasn't that great. So we're not even sure how long he might live and that completely terrifies me. I don't know if it will help or not but we're supposed to be getting referred to a cardiologist and pulmonologist so he can be closely monitored by someone who knows how to deal specifically with PPHN. But we're just trying to remain hopeful for the best outcome and wait till that time comes. 

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