Day 40:Frankie Fredbird Wins It In Extra Innings

Up and down day for Alex and I. We accidentally slept in today because my alarm didn't go off, so we took the day off. We ran a few errands and went and hung out at Forest Park for a little while on this super nice day. We followed that with a late lunch at Pi in the Central West End. Another good thing happened, I don't know if you heard, but the Cardinals won game 6. So there will be a game 7. I will tell you about the boy before I tell you the potentially bad news.

Frankie Firebird was awake when we got here and was cheerful. We cleaned him up, gave him a bath, changed his wrapping and diaper. I remeasured the omphalocele. The circumference has grown but the bust has shrunk. The circumference is 11.25 and has grown a .5 inch. but the "bust" has shrunk from 16" to 15.5". Keep in mind that Frankie Fairlaine in growing, so a losing a half inch is a bigger number than you think. We took turns holding him and he slept in my lap until the 8th inning when I had to pee. He got a little fussy after that and it took some gas drops to quiet him down. We had some problems with his oxygen saturation not keeping above 95% during this time. It was dropping into the lower 90s. But a little kick of the oxygen mix and a re-alignment of the sensor on his foot cured it. We were able to drop the air mix down lower than it originally was before this episode once we fixed the sensor. Besides all that, he was an angel as always. His feedings are now bolus. He gets 75ccs over 2.5hrs and then a .5hr off. This will be worked down to eventually full feed at 3hr increments. Also his Viagra has been increased again.

Now the bad news. When we got here, the doc on duty came and talked to us. Keep in mind these doctors rotate through, and this one has been the best, most informative, and most proactive doc we have had since we started. None of the other doctors did anything about the pulmonary hypertension, told us anything about it, and brushed it off. Joanie had a frank talk with us. We are working on his breathing with oxygen and Viagra and a specialist that works with kids with PPHN will talk to us tomorrow. There is talk about steroids and other treatments. Half way through the conversion she said something about PPHN could be terminal. We were dumbfounded. Obviously we had read about that on the internet, but thought nothing of it. I mean, if this was serious, then the doctors would have mentioned it, treated it, informed us, right? Not take 40 fucking days for a great doctor to tell us? Right? Joanie thinks Frankie Fleetwood can and will survive this, that it is mild enough to out grow it. But there is a possibility there. Wow. Seriously, if this was this serious why are we waiting this long to do something about it and waiting this long to even inform us. This drastically took the wind out of our sails. Everyone has been brushing this off for 30 something days. I could maybe see not letting us know if we weren't involved parents, but we spend 10 hours plus a day here and do everything we can while we are here. Frankie Ferrari will be fine. He will be burying us someday, not the other way around.