Tuesday, April 12, 2016

April 12, 2016

It's been a rough almost 48 hours, literally an emotional rollercoaster. Things have been up and down and back up and rock bottom.
Zeke's right lung collapsed Sunday night, likely from the ventilator pushing too much air, causing some of the little air pockets in the lung to burst. This let the air out, and it surrounded the lung, filling up the space with the air that should have been inside. They inserted a catheter to remove the air, and it worked for a while, but they ended up having to insert a chest tube into the right side of his chest.
He seemed to be doing ok on Monday, so Gary went home to let the dogs out and see the kids. He hadn't been home very long when he had to come back. Zeke's blood pressure was dropping really low and wasn't coming back up. The doctors were really concerned. They did a chest xray, and found that there was a lot of air collecting around his heart, which was causing it to not work well enough. They had to insert a needle into his chest and draw the air out for his heart to work. They did this the first time a little before 4:00pm. His blood pressure was dropping again by about 4:30, so they did another chest xray, same thing, so they stuck him again. After the second time, they told us that if they had to do it a third time, he was unlikely to survive. Around 5:30, we were at that point again. We told the doctor to do it again, because we weren't giving up. They did another chest xray right after the third time, and she said air was already starting to collect again, and that if we wanted to hold him, now would be the time, because they would not do it a fourth time.
So around 6:00, they took him out of his isolette, all his cords, tubes, wires, and hardware, and we held him for the first, and what we all thought would be the last time. We watched the clock, and watched the numbers on the monitor, waiting. Finally, it was 3am, and his numbers were ok. Not great, but we still had him, so it was good. We had passed a major hurdle. Nobody expected him to make it through the night. They had a photographer from Now I Lay Me Down To Sleep come in and take pictures for us, they did footprints, we were prepared to say goodbye. But it wasn't his time to go.
Today has been a rough day. We're constantly battling what's best for him, fighting the odds, not sure what's going to be next.
He still hasn't peed yet. He's on a high volume of fluids, but it's not working like they hoped it would. They did another bladder ultrasound, and there looked to be more urine than yesterday, but yesterday they couldn't get a catheter in. As Gary and I were leaving tonight to get dinner, the urologist came in to try to get one inserted. If he's making urine, which it looks like he may be, they want to test it to see how 'good' it is - whether his kidneys are actually filtering or not. If they can't get the catheter in, they may be able to do bladder taps (like what they did when he was in utero), where they insert a needle into his bladder and drain the fluid. They'll send whatever urine they can collect, through the catheter or bladder tap, in for testing to see what the next step is. His potassium levels are pretty high, which isn't a good sign for the kidneys.
At this point, he's not stable enough to transport for dialysis - they're not sure he'd survive, even with all the machines he's hooked up to. He's too small for them to do it here, and unstable enough that they're not sure if even a larger hospital will take the chance. The lung issues are huge, and would be huge on their own, as well as the kidney issues. Combined, it's not good at all.
At this point, we're relieved to have jumped the hurdle last night. He's still with us, and that's so much more than we were expecting. He's still on a high frequency ventilator that's breathing for him (even though he'll occasionally try to breathe over it), as well as oxygen. He's gone from 100% oxygen late last night/early this morning, down to 27% (room air is 21%), and it was back up to 35% when we left earlier. He's on a few different medications to try to keep his lungs open, keep his blood pressure stable, as well as an antibiotic, fluids, etc...
We'll try to update daily, but at this point, being with Zeke is the most important thing for us. We're not answering phone calls or texts from anyone other than our parents and the people who have our kids (who are doing fine, btw). It's just too much. We love you all, and are so thankful for your prayers and support.
**UPDATE**
They weren't able to get the catheter in. They'll do another ultrasound tomorrow morning, as well as another chest xray. If there's enough fluid in his bladder, they'll attempt to drain it with a needle.

April 12





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