A whole week of recaps

Oh, Hi there!

I know it's been a little while since we've had update and I apologize for that. If you've wanted to reach out to me and say something along the lines of "wtf, dude, where is my update?!" Don't worry, several people beat you to it. The up side is that this has reemphasized how many people care about our little man even after all this time. This last week has been rather eventful, which has more than a little to do with the delay on the blog updates. Some of the happenings are bigger than others, but lets address them in the battle tested method: chronologically.

Presented without comment

Last Saturday, Ezekiel's due date, the doctors felt that his respiratory status was in such a good place that they wanted to see how he would do without his breathing tube. They have a fancy term for this of course, which is an extubation trial. This didn't mean that he went from full support to none, he still got some pressure support and oxygen through nasal prongs.

Look how happy I am to have my breathing tube out!

Sadly, the trial did not go all that well. He held his own for a couple hours, but then began to deteriorate. At first, they assured us that this was common. After all, Ezekiel has never had to breathe on his own like this in his entire life. We had to give him a chance to figure it out. Later that evening, though, Ezekiel hit a speed bump in the form of narcotics withdrawl. He's been on pain and sedation medication his whole life and those drugs are strongly addictive. They had been weening his drugs slowly over a few weeks, but it finally caught up with him. He had tremors, sweats, and couldn't sleep. After 36 hours of herculean effort, it became clear that this was just too much for him. He was visibly struggling to pull breath and his stats reflected his struggle. He got his breathing tube back on Sunday evening and it was immediately obvious that that was what he needed. It was good to finally see him comfortable again, but failing the extubation trial was more than a little disappointing. 

Last week also brought another surgery.

Ezekiel clearly doesn't think surgery is a big deal

The surgery was a success and Ezekiel handled it like a champ, as usual. By this point, this sort of business has become old hat for him. The purpose of this surgery was to remove the blockage from his urethra, the dreaded PUV. These little flaps of skin are what set off the chain of events that put Ezekiel where he is today. There was definitely something cathartic about knowing that Zeke's urologist zapped them into oblivion.

The next day brought another care conference to discuses his rather eventful week. His respiratory status was first on the docket. After he had failed his extubation trial, his doctors began talking about the possibility of a tracheostomy. A tracheostomy (trach) is a surgically created hole in the front of the throat that leads directly into the windpipe. This provides a more permanent site through which to deliver lung support. During our care conference, all of his providers agreed that Ezekiel would need a trach. This took me a good long while to come to grips with, mainly because the idea of it seems so barbaric. The benefits of a trach have since been clearly explained to me multiple times and we will, as always, pursue what is best for Zeke. There are lots of reasons that this is what's best for him, but perhaps the biggest reason is that all of his doctors feel that he will need lung support for a very long time. Yes, "a very long time" is terribly ambiguous. I share your frustration, trust me!

On the urological front, the immediate goal is to get those tubes out of his kidneys. They've done their job, but they are a potential source of infection and we need to get them out. Their plan is to clamp the tubes and see if the kidneys will drain through the bladder since his bladder blockage is now clear. If that is not successful, Ezekiel will need a pyelostomy. This is a surgical procedure in which an opening is created in the lower back that allows the kidney to drain, thereby bypassing whatever blockage is keeping it from draining to the bladder like it's supposed to.

On the dialysis front, they want to continue to slowly raise the amount of fluid that they put in his belly for each cycle. The goal here is that the more fluid he has on each dwell, the fewer dwells he'll need in a single day.

I'm a baby kangaroo! (A joey, if you will)

The other good thing that came out of the conference was that his PD catheter was now finally healed well enough that we could hold him upright. The very next day we got to hold him, just him, like a real baby. Prior to this he was frequently in a little burrito sack and had to be held belly up on our laps. We loved it, for obvious reasons, but it paled in comparison to the feeling of holding him to our chests. It was simply awesome.

This week is shaping up to be another eventful one with a couple of potential procedures on the horizon. I'd say to stay tuned for another update in the near future, but we may have entered into a boy who cried wolf type of situation...

Until the next time I choose the blog over sleep!
Caleb