To the future!

Hey everybody,

My apologies for the radio silence. I didn't mean to leave you hanging after my last post, yesterday was just a busy and emotionally heavy day. My goal with this blog has always been two fold. Number one, to help people get to know Ezekiel. Normally a new parent would want to parade their child around, show them off, and tell everyone how proud they were of their kid. Since I can't physically introduce the world to my son, this is the avenue that I have chosen. My second goal is to keep the blog as lighthearted as possible. Ezekiel's issues are deadly serious, but I'm not trying to depress you like a Sarah McLachlan commercial for abused puppies. Yesterday, I would have failed in my second goal, today I'm not so sure I can accomplish it either, but this update is important. So here we are, one day later... let's catch up.

Day 5. Even though heavily sedated, he'll sometimes give you a  little squeeze.

We woke on day 5 to find out that Ezekiel had had a pretty quiet night. His lung numbers were looking good, and he had gotten a little pee out of both of those kidney tubes, which was great news. We also learned the hard way that he was becoming increasingly sensitive to noise and commotion. On several occasions, noise would cause his oxygen saturation to drop and his alarms to blare. This is always alarming... get it? Alarming?!

The afternoon brought a full team care conference, which is a meeting with all of his primary caretakers. It included at least 5 different doctors of varying specialties, 3 nurses, and a couple other peeps. Adding Jenny and myself to that room packed it to the rafters. They called this conference for the exact reason we were fearing: Ezekiel wasn't getting better fast enough and they had reached the point where there was no clear way to proceed. They presented us with 3 options and left the choice up to us. We were dreading this possibility. The gravity of this decision weighs more heavily than I know how to put into words. Suffice to say that yesterday was a day I will never forget, and hope I never have to face another one like it.

They opened with a comprehensive list of what they knew to be true. Ezekiel's lung disease is bad. They haven't seen enough improvement to say with any certainty that his lungs will ever be able to support him on their own. Ezekiel's kidney disease is also bad. People call it different things, end stage renal disease, renal failure, the semantics don't really matter. What matters is that his kidneys don't work. Yes, they are creating a tiny amount of urine, but they're not clearing waste from his body. These two issues also exacerbate each other, making them more difficult to treat. One on its own might be treatable, but the two together may be too much for his tiny body.

I hesitated to talk about the specifics of the choice we were given, but Jenny and I decided it was important for Ezekiel's story. I share these with you not because I want you to tell me the choice we made was right or wrong, the whole point of this conference was that there wasn't a wrong choice. Here are the options we were given:

• Pursue peritoneal dialysis. This is the highest risk/reward option. This would require putting him through surgery to place the dialysis catheter and open him up to potential infections and other unpleasantries. Since Ezekiel is as small as he is, the likelihood of success isn't great, but if it does work, it is his only chance at having a life.
• Wait and see. This would be exactly what it sounds like. We could wait to see if his lungs get better in the near future and then decide how to address his kidney issues. 
• Make Ezekiel comfortable for the time he has left. This one doesn't really require any more explanation. 

Thankfully, Jenny and I both agreed that we would pursue peritoneal dialysis. A disagreement here could have been nearly impossible to rectify. With no official recommendation to guide us, we can only do what we think is best for Ezekiel and his specific situation.

Saying goodnight after a hard day

Today is day 6, and we awoke feeling more confident that we had made the right decision for us. There may be people reading this blog that have been in a similar situation and made a different choice, and that is OK. I said it above and I'll say it again, there was no wrong choice. But when I look at the odds Ezekiel has already overcome, it's clear that he's not giving up. We were told he might die in utero, he didn't. We were told he might die during delivery, he didn't. We were told he might die during his first night of life, he didn't. We were told he might die during transport to the UW, he didn't. He is fighting for his life and we're going to fight right along side him.

I think he's frickin' adorable! I'm sure I'm not the slightest bit biased.

Totally natural family shot.

Ezekiel is currently scheduled to have his dialysis catheter installed tomorrow. It will be several days before they can use the catheter and find out if this treatment will work for him. For today, we're spending every second we can at his side.

Thanks again for reading and for caring about my main man, Zeke.
Caleb