Day 4

Good afternoon everyone!

Day 4, yo!

I'll start with yesterday's activities, since there was some excitement. We spent the morning and early afternoon talking to every doctor and that came into our son's room. It being Monday, we also met a lot of new caregivers and I am constantly amazed by how genuinely these people care for our son and every other baby in this unit. It takes a special kind of person to devote their life to this field, and devoted they are. Not a single person has looked like they're just lazily going about their day at work. Something happened yesterday that exemplifies what I'm talking about. In the middle of the afternoon Ezekiel finally had a break from his almost constant treatments and checks and I jumped in, scooted up a chair, and started to read him his first Star Wars story... don't judge me! From what I can only assume was his overwhelming excitement from hearing the first few sentences of the literary masterpiece Rogue Squadron, he flailed his arms and his oxygen began to crash. We've seen this before, his oxygen will dip and his nurses and RTs will tweak some settings or do some magic and he'll recover quickly, but this one wasn't like the others. His oxygen crashed all the way into the single digits (it's supposed to be above 90). His room exploded with activity, I don't even know where half of these people were hiding. Within a minute, there were at least 10 people in his room, many of them filling a role of some kind while others were on stand by if the worst happened. Thankfully the worst did not happen and he recovered after what seemed like an eternity.

Minutes later, we had another conversation with Zeke's urologist and he told us that they wanted to try again to get a catheter into that left kidney. He also reiterated that Ezekiel's condition was one of a kind. I don't think I've mentioned this before, but after they drained the bladder and the kidneys did not drain, they diagnosed Ezekiel with bilateral UPJ obstructions. I'm not even sure what UPJ is short for, but what it means is that there is an obstruction at the connection where each kidney attaches to its ureter. The ureter is the tube that carries urine from the kidney to the bladder. Our urologist said that he has never seen a baby with this type of obstruction make it to birth, so we are in uncharted waters without a lot of literature or studies to guide us. This is exciting and terrifying all at the same time. Ezekiel has already beat the odds a couple of times and we hope hope hope he can do it again.

They carried out the procedure of placing another kidney catheter and this time it was a success!

Ever wondered how many adults it takes to move a 5lb baby from his bed to an operating table? This many.

The success of this procedure lifted our spirits from the rough day and sent us to bed feeling more hopeful than before. We slept here at the hospital in one of their sleep rooms, instead of Zeke's room, so we could get some better rest. That didn't stop us from coming in to visit Ezekiel in the middle of the night, though, it's just hard to be away.

We woke this morning to hear that Ezekiel had had a good night. His blood gasses were looking better. Oh, you don't know what that means? Well, then you're in good company, 'cause I don't either. All I know is that the nurses were excited about it and so was Jenny.

Sadly, later in the morning that good feeling fled, and I hate to end this post on a negative note, but this update is important. During the doctor's rounds we found out that some urine had collected in his kidney catheters, but they thought it was likely that this urine had been trapped in his kidneys for a while instead of it being newly made. They base this guess off of the fact that the levels of creatinine, which the kidneys filter, have continued to rise. Even worse, Ezekiel's lungs have made no significant improvement since yesterday. This is terrible news because if his lungs do not grow, he simply will not be able to survive. They plan on giving him a dose of a drug that he's responded well to in the past, but they can only do that so many times, Ezekiel needs to be able to grow his lungs on his own. Today is going to be an all important day for our little Zeke.

I want to take this moment to thank everyone for the outpouring of support. Both Jenny and I have received countless messages and that lifts our spirits greatly. We haven't had time to respond to everyone individually, but please know that they are appreciated.

Thanks for reading and for caring.
Caleb.