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

Who wants a surgery?

Two days in a row? This has got to be some kind of a record!

These are surgery prep situps!

Today, Zeke left his room in the NICU for the first time since his arrival at the UW on November 2nd. He was finally stable enough to be moved down to the operating room instead of making the operating room come to him. I knew this was going to happen, but I never really thought about it until they started wheeling him out. It was odd how something so simple could strike me rather profoundly.

Thankfully all of Zeke's toys are on wheels

Since Zeke's operation was a late add on to the schedule, it got pushed back a little. He ended up starting his road trip at about 11:30AM. I know you're all eager to know how the surgery went, but this is Ezekiel we're talking about. Of course surgery went off without a hitch! The whole process took less than 2 hours.

Post surgery bundle

When they wheeled him back into his room, this was the first time I saw all of my son's face at the same time. Sadly, I didn't appreciate the moment for that gem, I was far too distracted by the newest semi-perminant hole in his poor body. Kids are amazing though, he has already accepted this as the new norm. In just a couple hours with his trach his oxygen needs disappeared, coming down to room air and staying there until we left the hospital. He's breathing more easily than we've seen in a while and will hopefully rest easy tonight since he can finally breathe at a normal pace.

One more for the road

Thanks for the all the kind thoughts and happy vibes sent our way today!
Caleb

Two months later

Welcome to the danger zone!

I was trying to come up with a witty way to start this post but nothing was coming to mind. I mentioned this to my wife and she was quick to offer quite a few theories as to why this may be the case. I'm not going to share any of those with you though, mainly because every single one of them was quite hurtful. So instead, I'll focus on the positive which is, of course, this little bundle of tubes.

Happy New Year from the NICU!

Since last we spoke Ezekiel has continued his torrid relationship with his breathing tube. He had his tube replaced on new years eve (shortly after the above picture). He was simply struggling too hard to breathe and his struggle was worsening. They wanted to replace his tube under controlled circumstances instead of waiting until his need became emergent. It was definitely the right call because once his tube was back, he started breathing easier. The only downside is that he gags on the tube, causing him to spit up. Spitting up all his feeds makes gaining weight more than a little tricky. Also, with that tube back in place, the talks of a tracheotomy began anew. Zeke didn't like all this talk, nor did he enjoy all this puking, so he took action. Even with his hands bound in adorable socks, he finds ways to get into mischief... this doesn't bode well for Jenny and I in the future. On the 7th, while he was being weighed, he was able to crane his neck back far enough to pop his tube out. All the medical tape the nurses stick to him cannot compete with his desire to be free of that troublesome tube. As of today he is still free of his tube and lovin' it, McDonald's style.

Before all of that though, something else happened: this little boy turned 2 months! To celebrate they put clothes on him for the first time. It's like he's a real boy!

He's collected a few new fluffy Star Wars friends

Another milestone he achieved is that he's now on his dialysis cycler. This cycler that now handles his fluid fills and drains is the same machine that he'll go home on. He's not to his full fill volume just yet, but we get closer every day.

His dialysis is going pretty well, but there have been a few hickups along the way. Keeping Ezekiel's hydration at a healthy level is a very delicate balancing act. We've gone back and forth between water overload and dehydration a few times. Part of this is because he's so small that there isn't much wiggle room. The other factor is that his dialysis goal is an ever moving target. It's been a bit of a roller coaster, with one case of dehydration that got pretty serious. Ezekiel actually began to go into hypovolemic shock, which means his body wasn't able to get blood to all the proper places. Thankfully the NICU team acted before things got insane, but it took several days for his blood pressure and heart rates to recover.

Jedi Master Ezekiel is wise beyond his years

In this middle of his dehydration crisis, they found out that his broviac catheter (which was his main IV site through which they deliver his medications and what not) was no longer delivering his fluids to the proper place and needed to be pulled. This left them in an emergency situation with no quick way to administer IV fluids. For short term access they decided to put an IV in his scalp! This looked as terrible as you might imagine, but Zeke didn't really seem to mind and it served him well. Since those types of lines don't last very long, he had to have another procedure to install a more permanent IV site. He now has this more permanent (and stable!) site in his right leg.

Other random fun facts: Ezekiel now has a hernia thanks to the dialysis. We've been told this is pretty typical because of all the strain dialysis puts on the abdominal wall. He now follows his Grandpa, Dad and Uncle Micah in the great Zart tradition of having a hernia. Some families have the coolest legacies. We also found out that he technically does NOT have clubbed feet. They still look like clubbed feet, but they're more flexible than real clubbed feet, I guess. This doesn't really change the plan for fixing them however, it's just a technicality. He'll still need therapy and perhaps braces.

Let me think... Why yes, I am totes adorbs! (This is how the kids talk these days)

Just today we had another care conference and we all came out of that meeting with the plan to proceed with a tracheotomy. "But wait!" I hear you exclaim, "I thought you said he was rocking it like a hurricane without his breathing tube?!" That's true, I did say just that, but there are a lot of factors at play here. One of the more important ones is that even though Zeke's stats look good without his tube in, he's consistently breathing very quickly to achieve those good stats. Healthy babies breathe around 30 times a minute. Zeke breathes between 80 and 100 times a minute. So even though he's keeping it up for now, he can't sustain this in the long term. He's also burning a ton of calories with his breathing that should rather be spent growing. That coupled with a few other boring factors make a trach the best option for him. Zeke is scheduled to have his tracheotomy tomorrow morning at 7:30 AM. Wish him luck and I'll be sure to let you all know how it goes!

Until tomorrow!
Caleb