Monday, April 18, 2016

April 18, 2016

Yesterday was a pretty rough day for Zeke.

They had a larger tube with two smaller catheters (one for blood to go in, one for blood to go out) inserted in his umbilical vein, (called a UVC - umbilical venous catheter) which is what they've been running the dialysis through. They were afraid that it may clot, because that's what the umbilical vein/artery tends to do. The dialysis machine can only run for up to 72 hours, and then they have to switch it out. He was due for a new pump yesterday morning. They got everything all changed over, and after running for about 30 minutes, the pump stopped working because there was a clot in one of the catheters. They put some blood thinner/clot dissolver in the line and left it for a few hours. They tried again, and they were getting some blood return, so they turned the dialysis machine back on. Again, it ran for about 30 minutes before it stopped. They decided to leave the thinner in the line and try again after about 6 hours. They still weren't getting enough blood flow, so they wanted to leave it overnight and try again this morning.

He was receiving lipids, extra calories, electrolytes, etc... through his IV, and was also getting a small amount (1mL/hour) of breast milk through an OG (oral gastric) tube. He was tolerating this all extremely well, but when they had to turn off the dialysis, they took everything extra out, and had him on a minimal amount of clear fluids. Even with the IV fluid reduction, because he was off of the dialysis all day, poor Zeke was retaining so much water and swelling so badly. His blood pressure was dropping, down to the 20's, and they had to increase the amount of oxygen they were giving him. He got up to 60% oxygen. We were really starting to worry, with the low blood pressure, because that's what was happening on Monday in Pensacola, when he had the cardiac tamponade (air around his heart) three times, where they had to remove the air with a needle, and said that he likely wouldn't survive. They had done a chest xray about an hour before and said that everything looked ok, so they started him back on dopamine to increase his blood pressure. It did the trick, and he was stable for the rest of the night.

When they tried to pull blood through the line this morning, it was still clogged. They talked to surgery about putting a line in his neck (called a vascath) that goes into his jugular, and that's how they'll run the dialysis. They've tried to avoid this, since it's more invasive than the UVC, and they're hoping to use the UVC for longer. Surgery was backed up this morning, so the doctors that were in this morning decided to remove the UVC that was clogged and attempt to insert another one. These don't often work for very long, but the longer they can use a UVC, the stronger he can hopefully get before needing another surgical procedure to place the other catheter.

They were able to get the new UVC in, they got good blood flow through it, and his dialysis was turned back on today around 2pm. He's had some issues today keeping his body temperature up, which was happening when he was on dialysis before. They put the heating pad back in his bed, and turned the heater in the bed up as well. We're hoping that he can get his temperature regulated and keep it up.
His blood pressure was looking really good, so they discontinued the dopamine this morning. He kept his blood pressure up all day. He was also keeping his oxygen saturation up, so they were slowly lowering his oxygen levels. He was down to 42% when we left at 5pm. The respirator is still set to 60rpm.

He was having a lot of trouble with his heart rate dropping (bradycardia) today though, dropping down to 70's and 80's at times. They said there could be several reasons he was having brady's - the increase in fluid he was retaining, his low body temperature, the position of his breathing tube, etc...
We've had a rough couple of days. Gary and I are both pretty exhausted and overwhelmed. We're still on the waitlist for the Ronald McDonald house here in Birmingham, so we've been hotel hopping, which is getting old. But we're so blessed that we're able to be here, and have amazing family and friends to take care of Ryker, Zadie, and Ezra.

At this point, we're praying that the UVC stays good for a while, that he continues to tolerate the dialysis and they can increase the amount of fluid they're removing, and they can restart and increase the amount of breast milk feeds he's getting. Once they get a lot of the fluid off him, he should be more stable and able to wean off the ventilator faster.


April 17
Daddy's Hand




April 18
Papa's hand


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