100 days of awesome

Gather round, children, let's continue our young hero's story. Since the last time we paused our story, something crazy has happened.

As rare as a unicorn...

Don't worry, he's still impossible to please. The only thing that makes him smile like this is the ceiling in his room. I know you're probably assuming that there is a painting of a cute little ducky, or maybe a few bright colorful lights up there, but you would be wrong on all counts. It seems that the only thing that brings my son joy is plain white ceiling tiles. There is nothing remarkable about them in any way, but that doesn't stop him from staring at it for hours and smiling occasionally... we're very concerned.

On to real updates: Ezekiel's EEG from a couple weeks ago showed no abnormalities and there has been no more "seizure-like" activity. They can't qualify his "event" as a seizure because he wasn't hooked up to any brain monitoring at the time. That's just a technicality, though, what matters is that it hasn't happened again and we're hoping that will continue to be the case.

Ezekiel imitating the grand master

Zeke hit a bit of a landmark since last we talked too: his 100th day of life! To celebrate the occasion, his nurses decorated his room with some Star Wars themed fun!

His feeding machine is labeled as "Force Fuel." Dad approves.

In other exciting news, there has been a lot of talk about Ezekiel's path to discharge. We've started working with hospital staff to get all the affairs in order so we can be ready to go when Ezekiel is. This includes scheduling home nursing, obtaining home healthcare equipment (ventilation and dialysis) and training Jenny and I to use all this stuff. We're still a couple months from discharge, so we have some time, but it's awesome to be actively working toward this goal. We've met with home nursing companies, been in contact with home equipment providers, and even had our first official training class. 

I had to add a scowl, just in case the smile above made you wonder if you were on the right page.

The prospect of taking Ezekiel home is still really hard to picture. He has come so far in just 3 months, it is crazy. After everything he's been through, he's still doing age appropriate things when everyone was expecting him to be delayed. It's just more proof that this little dude will not be held down by anything. This is also another testament to the amazing staff at AFCH and Meriter. I can't thank his doctors, nurses, therapists, aid workers, and everyone else enough for everything they have done for our son. I know I've mentioned how touched we've been by how genuinely the staff cares for Ezekiel and that feeling has not subsided in the slightest. It struck me then and continues to strike me, even after all this time. They didn't just save him, they helped him thrive... We will never be able to repay them for this gift.

Sleepy time!
Caleb

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

The new year cometh

So many updates, so little time. Let's do this!

Hawk'd up and ready to rock

When last I left you all hanging, we were expecting a surgery in the next couple of days. As that week progressed his surgery kept getting pushed back and was eventually scheduled for Friday the 19th, at 7:30 AM. Ezekiel was to have a vesicostomy and a tracheostomy. We've talked about a trach before, so I'll go ahead and assume you remember what that is, but what is this mysterious vesicostomy? Gather 'round, children, I'll tell you. This is a procedure where an opening is created from the bladder to the outside of the body. They thought Zeke needed this because he still wasn't peeing. He was creating a small amount of urine, but it was just sitting in his bladder. They assumed this was happening because his bladder is severely damaged from being blocked for so long that it was unable to push that urine out. They can always use a catheter to drain it, but this isn't a good long term solution mainly because of its infection risk.

Jenny and I arrived at the hospital bright and early to be there before surgery. The nurse was already scrubbed up and getting ready to wheel Ezekiel to the OR when Zeke's urologist came in and told us that they had decided to cancel the vesicostomy. They felt that it was just too dangerous for Zeke because there was a risk of compromising his stomach cavity. If that happened, they would have to halt his dialysis and that just wasn't an option. Canceling the vesicostomy also ended up canceling the trach. Zeke's need for a trach wasn't emergent and they wanted to combine this with another procedure if possible, to reduce to strain on his body. The likelihood of him needing another procedure in the near(ish) future was great enough that they wanted to hold off for now. We got all worked up for nothin'!

Spoiler alert for the observant

That night we got an infection scare. Ezekiel had a couple dialysis drains where the fluid was very cloudy. Normally this fluid is clear, if tainted slightly yellow. Cloudy fluid can be the first sign of peritonitis, which is a dangerous and painful infection of the stomach lining that makes peritoneal dialysis possible. This is the infection they've been warning us about before Zeke even started dialysis. They said if he got this, they were afraid it would be too much for him to handle. They started Zeke on antibiotics immediately and started running all kinds of tests to verify whether or not he had an infection. The next morning we got a visit from the infectious disease team and they brought bad news. Their tests had revealed yeast in his dialysis fluid. This pointed to the fungal type of peritonitis, which would likely mean his PD catheter would get clogged with fungus and need to be removed. Curiously, Zeke was acting normally, and his dialysis drains had gone back to crystal clear. This had everyone scratching their collective heads, but they wanted to proceed as if he were infected simply because peritonitis ain't no joke. They did more labs, and took another sample of his dialysis fluid. All of these tests came back negative and his fluid analysis revealed no yeast. The original findings were chalked up to an over zealous interpretation of his slides. Finally able to breathe easier, we went home to rest.

No rest for you!

Zeke had other ideas, though. At 3:30 AM, we got a call letting us know that Ezekiel had coughed out his breathing tube! He did this with expert timing. The tube is always taped to his face, but he waited until they were changing said tape and executed his perfectly timed plan. We rushed into the hospital because we can interact with him so much more without that cumbersome tube and he could need it back in at any moment.

"These grey hairs you see are all because of you, son."

Ezekiel continues to surprise us all. Today, one whole week later, he is still without his breathing tube. He still gets a decent amount of support from those nasal prongs, but he's doing pretty well. His ventilator settings have fluctuated and there is still the possibility that he'll need the tube, and perhaps that trach, but for now we're pumped about how well he's doing without it.

I can do so many more things without my tube!

Just this past friday, the 26th, Ezekiel finally got his kidney tubes removed. The next day they pulled his bladder catheter, bringing his tube count all the way down to 3. Not that long ago it was as high as 10! Having all these tubes out makes him easier to handle and interact with. Jenny and I can finally comfort him in real ways instead of just patting him on the head from the side of his bed and saying "there, there, little one." We can now slide our hands under him and lift him slightly off the bed in what I have dubbed a ghetto hold. Rocking him slightly usually comforts him and us!

On the dialysis front, his fill volume has also continued to increase and they should be able to finally use that 90's fax machine they call a dialysis machine in the next few days. I'm sure his nurses will appreciate that since they've been doing it all by hand this whole time!

As you may have heard, this last week was a holiday of some renown, and the NICU handed out some gifts for the babies and their families. Hidden amongst the stack of Ezekiel's loot was this:

A fist bump made for the ages

I wasted no time in reading him the newest addition to his stack of books. The verdict is still out on who enjoyed it more, but as you can see in the picture above we shared our first fist bump for the photo op... how awesome is that?!

Thanks again for reading and for caring about Zeke!
Caleb

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

The post that's 3 days late

As usual, I promised an update and then left you hanging. It's becoming my thing now, it would seem. Don't worry, my Dad already scolded me. As I am now a father, I feel even more inclined to do as my own father says, if only in a backhanded attempt to get my son to do as I wish. So far my experiment has yet to yield any measurable results. More tests are needed.

Look at mah face!

On Tuesday we had another care conference. With all of Ezekiel's forward progress since our previous conference, our expectations had gotten a little out of whack. It took a little wind out of our sails, but it was yet another exercise in some good ol' fashioned expectation management. With everything Zeke has overcome it's easy to think "hasn't he done enough? Can't we just take him home?!" Sadly, that's still not going to happen anytime soon, but he's still keeping everyone on their toes and making some awesome progress.

"Stop moping about, old man, and fill everyone in on how awesome I am!" Ezekiel said rudely to his father. Fine, jeez, kids these days have no respect for their elders.

Here are a few things that came out of our conference:

• Zeke is scheduled to have another surgery on Thursday of next week. This surgery is to remove the blockage in his urethra. After doing this surgery, they will clamp the tubes in his kidneys and see if the small amount of urine that they are making will drain through his bladder. If this doesn't happen, he'll need another surgery to address that issue.
• They're starting to go up slowly on the amount of dialysis solution they put in him on each cycle. Part of the reason that he needs dialysis around the clock is because they're using such small amounts of solution. To get him on a regimen that manageable from home, they'll need to increase that fill volume from 25ml to around 200ml. They'll do this slowly because they're very worried that the larger volumes will negatively affect his lung function due to pressure it will put on his diaphragm.
• Orthopedics is supposed to be visiting Ezekiel soon(ish) to start addressing his clubbed feet.

In other news, he got off his sedation medication today! They were keeping him sedated because his lungs couldn't handle him being awake, but that's no longer the case, as evidenced by all the new pictures of him with his eyes open!

Frogs make the best hats.

Now that it's after midnight it is officially the 6th, which was Ezekiel's due date. Happy due date day, little man! I've prepared a happy due date song to sing him when I see him in the morning. I expect him to applaud, which would be the only reasonable reaction.

Until next time,
Caleb