Day 41: Frankie Fawn's First Worlds Series Win!

Alex and I came in at 1:00 for our meeting with the specialist. He was a very intelligent, kind and informative person, but we did not come away from the meeting with much new information. Joanie the night before had given us roughly the same info. He explained there is not much information on infants with PPHN, children with omphaloceles, and definitely not any info on them combined. The best thing we got from the meeting is that Frankie Ferrett is a baby, he grows. Meaning he can grow new lung tissue with better vesicles in it. Some of the questions we asked are below...

What are his chances of surviving?
All three Doctors had high expectations of him surviving, but with lack of info, especially for kids with both PPHN and Omphaloceles, there were no numbers they could give us.

What are the long term effects of this?
Unknown. I expected him to be "asthmatic" at the least, but they said if he outgrows it, he outgrows it.  

What is causing this?
They believe it is in his lungs only. This is a form of lung disease. Whether it is undersized lungs, underdeveloped lungs, or defective lungs are unknown at this point.

How long will we be here at the NICU?
Obviously there is no glass ball, he could wake up tomorrow healed or quite the opposite, good days and bad. But they could not give us anything for right now. There is another heart echo planned next Thursday. We have started steroids, and we will see how those work. Although this is in his lungs, the heart echo will tell the pressures coming and going from the lungs.

Treatment?
Obviously the oxygen and Viagra we have already spoke of. The newest thing he started are steroids. This is kind of a trial and error thing since there isn't much literature out there. We don't think he has responded well to these. He has barely slept and has been very upset in constant waves since we have been here. When he did finally started to relax it was time for another round. They will reassess this at the latest at the next Thursday echo. If he doesn't improve, then a lung biopsy, cardiac catheterization, and CT will be the next course of action.

So from here, once again, time will only tell, but I can tell you this, if Frankie Foxhound is as stubborn as his parents, he will be terrorizing the neighborhood in no time.

We did sneak away for a few hours tonight to eat dinner and watch the game at Cody and Anna's. We want everyone to know how much we appreciate the support, love and encouragement we get from our friends and family. Everyone reading this feel free to give yourself a big hug, but anything else you do is not from us. Depending on who you are of course.