I have a son that was born 3-26-14 and was immediately diagnosed with Persistent Newborn Pulmonary Hypertension. He was diagnosed with this because he was grunting (which they said was him trying to clear his lungs). From there things got worse as he did not respond to O2 replacement, CPAP, or a conventional ventilator. All within approximately 30 hours of life. He was transported to a different hospital more sophisticated equipment and a whole lot of worry. Upon arrival things didn't get any better and he was placed on an oscillating ventilator. 3 days into the ventilator treatment we were told that his hematocrit was low and he needed a blood transfusion. After the transfusion things seemed to get better.
He was on the ventilator 5 days and they finally were able to ween down the o2 concentration and take him off the ventilator.
However since then, he has struggled with stabilizing his o2 saturation which has brought the doctors to throw around terms like hypoxemia, patent ductus arterioles, and now that he has not shown improvement I feel like everyone is poking around with a stick and trying to see what sticks to it. He has passed his heart echos, he passes all of his blood gasses, however, he still seems to decline quickly whenever he gets irritated and then they turn up the settings on the CPAP and the doctor came in today saying that she may have been wrong and his lungs are worse off then she thought and they are full of fluid.
With all this being said I'm questioning the credibility of these doctors because they have admitted to being wrong, he made progress and now he gets worse again. Could there be a hidden condition that they over looked, similar to the low hematocrit level that nobody caught until day 3? I have also been told that once the patent ductus arterioles is fixed then the patient does not regress. "Once the valve opens, it doesn't close again. " So if the valve is open why are his o2 stats still dropping and struggling to maintain? Also his o2 desaturates when he cries or becomes irritated but then recovers. I wonder if them poking him and moving him and irritating him is the reason he is "de satting" and he really is fine and over the PPHN.
Last I checked, all babies cry, they all turn red, they all get mad over small things. So why are these doctors basing everything off what a node sensor tells them when he is behaving like a normal child? I just want me son back locally so I can get back to being around for all of my kids instead of banging my head against a wall because one sick kid gets better but still has juice to squeeze out of the insurance fruit. Obviously I have been depressed, emotional, happy, overwhelmed and now ANGRY all in a short week but I'm feeling like me and my family are being manipulated or at the least misinformed about what is going on.
Can anyone here lend some advice or wisdom as to what is going on here? Am I the pawn in the hospitals game of chess with the insurance company or is he still really that sick. I'm losing my patience. Thank you in advance for anything you may have to offer.
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