From Emperor Palpatine to Professor Xavier

After so many days, I can only start this post but with a picture of our young hero.

Strike a pose!

Last time we all sat down and chatted, Ezekiel had just gotten his trach. It has been an adjustment, but Ezekiel has a lot more freedom of movement than he did with his other breathing accoutrements. This was definitely the right choice to make for him. I just have to remind myself of that every now and then, especially during his twice daily trach cares. He hates them with all of his being. Emperor Palpatine would be proud, for the hate flows through him. I kid, of course, I just like to take every opportunity to remind you that I like Star Wars... a lot.

Ezekiel was actually doing so well with his new trach that they tried him on the home ventilator just this past Monday. The home ventilator is exactly what it sounds like, a portable ventilation machine that can be used at home. It's much smaller and therefore portable, but cannot deliver as much support. This was very exciting because getting him on the home ventilator is one of the major steps that needs to happen before he can come home. Having a successful trial here would shorten his hospital stay. Sadly, he only lasted 12 hours on the home vent and is now back on the hospital grade ventilator. It's ok, though, because this trial came much sooner than we had expected.

So dramatic

Another big step has happened since last we talked:

Check it!

He's finally getting food through his mouth, like a real boy! This may seem like an odd thing to be excited about since babies usually eat on their first day of life. For Zeke, however, this was a milestone. Remember, he's had breathing and feeding tubes crammed in his mouth his whole life, all unpleasant experiences. Kids in this situation can develop an oral aversion and refuse to take feeds by mouth. Not Zeke though, that boy loves his baby juice. He's only eating small amounts by mouth, so he still needs his feeding tube, but it's still a win.

In other news, Ezekiel has progressed to the point where his doctors felt that it was ok for him to have limited visitors again. Since he's down to 3 tubes (from 10) and he's significantly stronger, he needs some love from his family.

Grandma and Pappers Zart

Grandma and Pappa Horn

I've been telling Ezekiel that these people love him every night before we leave the hospital, but I'd rather they tell him in person, so they did! Having our parents visit him again was awesome. No one had been able to see Zeke since his first week of life. It was a long time in coming.

Ezekiel apparently thought that the last week was too status quo, so he decided it would be fun to have a seizure on Monday night. I had the distinct displeasure of witnessing this event, which lasted several minutes. This was a bit of a curve ball since this issue was with a different system than the two that we've been dealing with thus far. There was no apparent cause for his seizure, but the hope is that it was isolated event. To be sure he's had his brain activity under police surveillance since Monday night.

All these wires better give him psychic powers

He hasn't had another visible seizure, but the worry is that he's having more minor seizures that don't show any visual signs and could potentially affect his brain in negative ways. We're supposed to get a report on this tomorrow, but the causes of seizures are notoriously difficult to diagnose, so we're just hoping that it doesn't happen again. This poor kid already has enough to worry about.

One last thing I'd like to touch on is really just a crazy random happenstance. My first cousin, Jennifer Bendorf (previously of Haney fame) had her first child this last Saturday. She gave birth to a beautiful baby girl, Naomi Ann Bendorf. Naomi had a few issues that got her transferred to the NICU at Meriter hospital here in Madison. That's the very same NICU where Ezekiel spent his first days of life. Not only that, Naomi ended up in the very same room Ezekiel was in. Out of the three NICU facilities in Madison, and the 30ish beds at Meriter, how likely is it that Zeke's 2nd cousin would be transferred to the very same room where his life was saved? I'm no mathematician (Micah, I expect numbers on this tomorrow) but I'm guessing that it isn't very likely. Naomi is doing well and will hopefully go home soon, but please save some of your happy thoughts for her and her parents.

One more for the road. Yes, that's a giant plush kidney.

Until next time!
Caleb