Still at Bronson but doing better
Thanks to everyone for all of your support, prayers, well-wishes, and offers of help. Evan is doing better today. His attitude is better and he isn’t as fussy as yesterday, but still more fussy and pissy than normal. There are fewer incidents where he is crying uncontrollably, but they still happen where he is inconsolable and the nurse gives him a hit of morphine and he calms down and does much better. This seems to be on par with his previous behavior too. It seems familiar to me that when “typical” kids would do fine taking dose X of a painkiller, Evan would like a little higher dose please for a little longer. He isn’t a “wimpy” baby and is very happy so I believe him when he wants a little extra meds for his owie. He isn’t turning into some baby addict that’s for sure and most places are very cautious about handing out the goods as well. We still haven’t gotten a smile out of him, which is rare because he smiles a lot, so we can see that he is still uncomfortable.
He is still carrying extra fluid so they gave him an IV dose of Lasix becasue it does work better than just taking it orally, which he does once a day. So hopefyully with that we will see some heavy diapers as we work to get rid of the swelling and puffyness. I rememebr this being an issue at UofM as well – Evan likes to hang onto his fluids.
We got another EKG today as well as an Echo to check out heart function. Both tests show everything working like it should. Evan is still wearing the cannula with an O2 flow because his sats (O2 blood level, pulse ox, etc.) are lower than we’ve seen still. Our normal weekly cardiology appointments check his O2 and it is usually in the mid to low 80s (heart healthy folks are 99-100%). Today it has been in the high 60s to mid 70s. Our nurse has orders to turn down his O2 when his readings are in the 80s and so far that hasn’t been allowed to happen. The levels that we are getting are within the range for babies with his anatomy (having a BT shunt) so it is only low because it isn’t his typical level. He does look a little bluer in the face and not his normal pinky self. Ah cyanotic circulation…
I guess I didn’t really understand just how close we were to losing Evan yesterday morning. In talking with the PICU doc (same one from yesterday too) he was explaining the different tests that were performed and the results given (we already knew most of this but it was kind of a recap). He said based off the EEG findings, nothing was found that would indicate some trauma suffered in the brain from “going down” yesterday. His assumption is that Evan wasn’t down long at all, which was also reiterated from his blood gas (he was not acidic). He also said that in his experience with kids with single ventricle defects, especially those with BT shunt prior to the Fontan, that once these kids go down they don’t come back. He said their anatomy is so tenuous that the disruption to their normal flow can rapidly spiral out of control. He said that very quickly the vasculature can close up and the little babies just don’t come back once their hearts stop. I can’t even go there – to think of the what ifs and ponder at not having our little boy. We are so fortunate we received the outcome we did. We continue to appreciate all of your prayers regarding Evan’s complete complication-free recovery.
