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.
Monday, May 2, 2016
So, we're kind of at a standstill right now with everything. Ezekiel's not really getting better at this point. He's staying the same in some aspects, and backsliding in others, which is all very very frustrating.
His blood pressure is still fairly low (low-mid 30's; they want it in the 40's), even though he's on two different bp meds (still on the maximum dose of dopamine, and a low dose of vasopressin). His They want his oxygen saturation between 90-95. When it goes higher or lower, they'll adjust the amount of oxygen he's getting.
His heart rate has been in the 140's-160's, which is good, and he's not having many brady's. His ventilator settings have been up and down. Right now, he's on a rate of 55rpm, his pressures are 5 and 20, and his O2 is at 74%. He's been down on all three settings, and he's been up higher than where he is now.
He just received another blood transfusion - his hematocrit was in the 20's this morning, and it's up to 36+ now.
He's still on versed and fentanyl to try to keep him comfortable.
His fingers are still pretty gnarly looking. His middle finger looks better, but the ring finger on his right hand is still black. They've been hoping that it was a microclot that got lodged in his fingertip, and that once they started the second bp med, it would help, but it doesn't seem to be. They're not really saying much about that right now, but if it doesn't clear up soon, he'll likely lose that fingertip.
His white blood cell count has still been high, and that, combined with the fact that his abdomen is distending out to the sides, and the allover swelling/edema he has, means that there's some kind of infection somewhere in his body that he's not able to fight. He's on four different antibiotics right now (flagyl, vancomycin, amphotericin b, and cefepime). The amphotericin is to treat a possible fungal infection, since the other antibiotics for bacterial infections weren't having much of an effect. They just started this one yesterday.
He's also receiving something called mucomyst, which helps break down the fecal matter and mucous in his digestive tract and helps it pass. He's not a big fan of this - it's the only oral medication he's getting - and ends up spitting some of it up most of the time, but it's definitely doing what it's supposed to, and he's passing stool into his colostomy bag.
He also still has the superpubic catheter (placed through his abdomen into his bladder), and he's having some urine output. He's had about 20mL in the past 8 hours or so.
Because of his low blood pressure, he's not tolerating them trying to remove excess fluid during dialysis, so they're leaving on 5mL/hr, instead of pulling off the same amount of fluid they're putting on. (Because of evaporation, sweat, etc..., he loses about this much fluid anyway).
He's not receiving feeds right now. He has to wean off the vasopressin completely and go down on the dopamine before they'll start breastmilk feeds again. He's still receiving lipids and tpn fluids through his IV, which gives him the fats, electrolytes, nutrients, etc... that he needs.
His weight, head circumference, and abdominal circumference are all taken at midnight every night. The goal right now is to get all of them back down. Right now, he's up almost 2 1/2lbs from his birth weight, which, since he's not actually eating anything, is all fluid retention.
What needs to happen first, is the infection needs to be identified and gotten under control. His body isn't able to do anything else if it's trying to fight infection.
Once the infection is gone, hopefully his swelling will go down some, which will hopefully help his blood pressure.
There's a lot of unknowns, a lot of 'wait and see', and a lot of 'we hope' going around. It's hard, because he's got so many different things going on.
I really just want to hold my baby. I want him to get better. I want him to get well enough that we can hold him. I want this infection gone. I want him to lose the bad weight so he can grow and gain good weight. I want him to feel better. I want him to heal and grow and come home. It's been a rough week or so with little to no progress. I'm really struggling right now, knowing that there's literally nothing I can do for him to help him get better.
2610g (5lb 12oz)
His poor little fingers... They're starting to look better, though!
Hard to believe these were all taken on the same day!