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.
Thursday, July 28, 2016
July 28, 2016
A quick update for the week.
Zeke has been doing ok. He's had some blood pressure issues - pretty low one day, high the next. His pump has been flowing mostly without issue, and they've been able to keep it going.
His weight has been up and down, but has been pretty steady between 3.7-3.9kilos (8lb 2oz - 8lb 10oz) in the past week.
They tried to do a hearing test on Monday, and he freaked out before they got all of the equipment hooked up, so they decided to wait on that. He also had to get some blood and a saline bolus on Monday because his hematocrit and blood pressure were both low.
They did an echo on Wednesday morning, and everything looked good.
Zeke has been having a ton of issues with the other line in his neck, bleeding, coming dislodged and pulling out, etc... They were finally able to locate a line that is tunneled (goes under the skin) and cuffed (has a ring on it so it doesn't become dislodged). They had a few meetings about the best line to use, and finally decided on one. They took him down to surgery Wednesday afternoon (7/27) to place the new line. It goes into the same vessel the other vascath did (in the right side of his neck). It enters the vessel just above the collar bone, and goes under the skin to the left side of his chest. It comes out there, and is stitched to the right side of his chest. They're hoping that this line will cause fewer problems with bleeding and needing to be replaced so often. This line isn't one that's typically used for dialysis. It's longer than the other one, and smaller in diameter. Both of these things contribute to higher pressure in the line to reach the same amount of blood flow, which is causing some issues with the pump - especially when Zeke gets upset and starts crying - this increases his blood pressure, which makes the pressure in the lines go crazy as well.
Since the anesthesia meds wore off yesterday evening, Zeke's been more agitated off and on, and has needed quite a few doses of fentanyl throughout last night and today. Hopefully they'll get his pain under control and he'll be able to rest without so many meds. For some reason, he shakes a lot when he gets the extra meds - almost like withdrawal, but it's when he gets more, not less that I notice it more.
The vent settings have stayed extremely low. He's on a rate of 20, and the pressure is 16/5. He's been on 21% (room air) to 30% Oxygen all week. The hope is to extubate in the next few days and see how he does.
They also started breastmilk feeds today. Right now he's getting 5ml every 3 hours. As he tolerates it, they'll increase the amount.
I did get to hold him yesterday for a while before his surgery, and it was amazing, as usual. I didn't even get mad that surgery was way behind - it just meant that I got to snuggle him for longer!
All in all, things are improving slowly. We're praying that his line is successful and works well, and that he can calm down and feel some peace and be able to rest well and recover from surgery soon. He's an amazing little fighter, and we're so thankful that he's part of our family.