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.
Sunday, May 29, 2016
May 29, 2016
Ezekiel has been doing really well since his surgery on the 25th. Even with the added complications with his bowels, he has recovered surprisingly well. There haven’t been any major changes since then, so we’re just in wait and see mode. There was a minor issue with the dialysis pump yesterday so they had to change it out, but Zeke was fine through it all.
He’s continued to improve on all of his settings since the surgery. He’s weaned down on his Dopamine and is at the minimum dose of 5 (which is where the renal docs want him). We’re still waiting, but hopefully tomorrow he’ll continue to maintain his BP and they can start taking some fluid off. His ventilator settings have continued to come down and right now he’s on a pressure of 24/6, a rate of 25, and O2 concentration of 38. He’s been stuck right around 40% O2 for the last couple days. Every time they try and wean him by 2% on his O2, he starts bouncing all over the place so they’ve been going really slow. They just weaned him on his nitric so he’s now down to 10 ppm.
Of course, after I start writing this, he decides to act up. The nurse and I just noticed that he had blood around his head and it turns out that the vascath in his neck had started leaking blood. It ended up not being a huge deal as they were able to put some pressure on it and stop the bleeding. They ended up having surgery take a look at it to ensure the placement was still good and were able to just change the dressing on it and restart dialysis. They’ve continued to just keep an eye on it to ensure that it doesn’t happen again.