pulmonary hypertension

thishappyhouse

Anyone have any experience with PH?  

Virginia is seemingly very healthy for a 25 weeker and was discharged from the NICU in February with no meds and no oxygen but as of early June still had "mild" pulmonary hypertension.  Our pedi seemed suprised that her pressures were about the same as they were at  discharge.  

Her respiratory course included lots and lots of surfactant the first 2 days, 60 days intubated, 10 days nipv/cpap, 20 days on low flow.

 Im sure her next echo/ekg will be telling but just wondering if anyone else has dealt with this

kelkel09

my DS has mild pulmonary hypertension, but at this point he is not being treated for it. He was intubated for 3.5 months before getting a trach, but was still on the vent for another 3 months before they were able to wean him off. He has severe chronic lung disease/BPD. He came home in April at 8 mths old on 28% oxygen 24/7, but was just recently weaned off (he will be a year next week). The doctors feel like the pulmonary hypertension is secondary to his lung issues and as his lungs develop and get better the hypertension will go away on its own. They will just monitor him every 6 months or so, but aren't doing any medications or treatment at this point. Not sure if this is helpful for you or not, but just wanted to share my experience. Best of luck to Virginia! 

thishappyhouse

Thats exactly what we are doing... monitoring every 6 months.  She has a coronary artery fistula that has to be monitored on the same schedule anyway.  Thanks for sharing your experience!

Im so happy to hear your little guy is weaned off oxygen!!! Happy Birthday to your babies too! 

bhilyer

One of my guys has PHT in addition to BPD.  He's still on oxygen at 16 months old.  

Is she having any side effects because of the elevated pressures?  Is she followed by a pulmonologist and a cardiologist?

 

thishappyhouse

She is only followed by a cardiologist because she was off of diuretics and oxygen at NICU discharge.  She isnt symptomatic that I know of.  

Everyone seems surprised but not concerned(?!) that she is still screening positive for PH.  Do you think I should push for her to be seen by pulmonology too?  My biggest concern is that she has not yet gotten sick, so we dont know what that looks like and we are unsure whether she will be getting synagis this winter.