Our story of having a baby with posterior urethral valve syndrome.
A small part is the journal of the diagnosis and fetal surgery, and my time in the Perinatal Specialty Unit waiting for his arrival.
Mostly about his journey, his fight, and his strength in dealing with the struggles and hurdles his condition is throwing at him.
Zeke has been doing quite a bit better the last few days. He’s actually been really calm and sleeping really well. He’s been able to come down a bit on his ventilator settings so it looks like he’s starting to come through the rhinovirus he’s got. They were able to bring his rate down to 35, and he’s been as low as 68% O2. His pressures are still pretty high (33/7) because he has a good size leak in his vent tube. The tube’s apparently too small (he has a 4.0), so at some point they’ll have to put a bigger one in.
His blood pressure has stayed pretty low all week and hasn’t responded very well to the dopamine or leaving additional fluid on. His mean has stayed around the mid 40s even with pretty regular bolis’. Nephrology came by today and expressed concern that even with everything they’ve been doing to raise his BP, it’s still staying low (especially for him). They’re worried that the yeast that they found in his dialysis line is getting flushed into the blood. They recommended replacing his dialysis catheter and neonatal and surgery concurred. They have him scheduled to go to surgery tomorrow. While they’re taking his line out, they’re going to try to run it differently to leave room for ENT to put a trach in. Hopefully that works out because we think the trach will really improve his quality of life.