Sum Sum Summertime

Welcome, welcome. Please, come on in, pull up a chair. I have a story to tell.

Everything the light touches, is our kingdom

Amidst all the exciting current events, our young hero continues to kick some booty. We've had more appointments than I can count since last we talked, but things still move much more slowly once you're at home. One thing that Ezekiel does continue to make progress on is what I like to call his prime directive: giving me an ulcer. We've had a few scares, an emergency appointment, and other sorts of excitement, but nothing has turned into a terribly big issue. My growing ulcer notwithstanding.

One of the bigger incidents was a set of lab results that were way out of whack. The main culprit was his BUN. This is a value that measures waste product in his blood and was what they used as a marker for when he needed to start dialysis. It also tells them how effectively his dialysis is working. Someone with normal kidney function will have a BUN of less than 10. Ezekiel, and other people in kidney failure, will have an elevated BUN. He usually hovers in the 30-60 range. Two weeks ago him BUN was 130. That's 22 points higher than when he started dialysis for the very first time back in the NICU. A BUN that high will make you feel sick and that was definitely the case for Ezekiel. Thankfully, after some changes to his dialysis prescription, his BUN did eventually drop back within acceptable ranges, but it took a couple weeks. This is what I mean when I talk about my ulcer. It's stuff like this that gets sorted out eventually and doesn't even really make that great of a story, but it's gotta be there, taunting me. There are a few other stories like that, but they all follow this formula: (X being everyone's favorite variable) We noticed X. We got really worried about X. We called the appropriate specialty about X. They had us come in so they could look at X. They didn't think X was bad enough to do anything specific. They asked us to keep and eye on X for a few days and let them know if anything else happened. A few days later, X was gone/stopped happening. Great story, eh!?

I can finally roll over!

There's still not much to update you on the lung front. He will still go weeks without needing oxygen, but so far he hasn't made it longer than that. We have an appointment with Zeke's primary lung doctor this coming week, so we hope to have more to report after that.

On the developmental front, our young hero continues to hone his skills. After he came home, Zeke really seemed to plateau with his physical and oral development, but we've since gotten some professional help on both fronts and he's responding very well to the therapy. He even seems to have a good time while doing it!

Zeke loves showing off at physical therapy

He's also working on growing some teeth. He's had lumps on his gums for almost 2 months now, but those little runts have refused to burst through. With Zeke's oral aversion, he doesn't take much for teething toys, so he mostly just powers through.

Delicious peas!

I think that's about it for now. Not a terribly exciting update, but an update none the less.

A Month At Home

Welcome back, so nice to see you again!

If any of you are on Facebook, I assume you're aware of the fact that Ezekiel is home and we like to post pictures of his cuteness. To those who are annoyed by people posting pictures of their "stupid" kids, I would apologize, but it wouldn't be sincere. As a peace offering, please enjoy another picture of my spawn.

Boom

Since it's been a whole month since we've had an update, let's rewind the clock to when we spoke last: the day before discharge. I'll set the scene. Our young hero is just a few days shy of being 5 months old as his hospital stay draws to a close (significantly ahead of the projected 6 - 7 month stay). Jenny and I both just finished our 24 hour care sessions with no major incidents and only small amounts of vomit and other baby fluids on our clothes. On Sunday, the day before discharge, we made a flying trip to Boscobel, where my parents live, for a baby shower with my side of the family. This may seem like pointless exposition, but I bring it up for a couple of really good reasons. Number one:

Have you ever seen a cake this awesome?

Number two: On our way back, it started to snow pretty heavily. Ezekiel's streak continues! Clearly, we should have planned for this since it was a big day for him. We made it slowly and safely back to Madison in plenty of time to complete Ezekiel's first road trip. It was a little panic inducing to take him out of the hospital for the first time, but he seemed to be quite content riding in the car. He was wide eyed, soaking everything in the entire time.

So many new things to see!

That night, it snowed again. For those who forgot, it snowed the morning Jenny went into labor, it seemed quite appropriate that it would snow the morning we finally brought the little man home 5 months later. Yay Wisconsin!

The view from Zeke's room the morning of discharge

Discharge day required a little more waiting around than I expected, there were just lots of things that needed to happen in the proper order. I thought they were just dragging their feet so they would have more time to get all the floats lined up in the proper order for Zeke's parade. Sadly, I didn't see any floats on the way out of the hospital and have since written a strongly worded email to hospital management expressing my displeasure. They have yet to respond.

We made sure to stop by the NICU to give Zeke's former subjects one last chance to honor him

Our first week at home was crazy. We had just gotten him out of the car when the home nursing people arrived with lots of paperwork to go over. The next days were filled with appointments, home visits and countless phone calls to and from clinics, equipment providers, insurance and whatever else. That has slowed down a little, but all of those things are just part of our life now.

So here we are, a whole month later. There have been plenty of firsts and awesome experiences. We may sleep a little less, but we are ecstatic to have our little boy at home. We have also completely changed our stance on night nursing and now think that it is the most wonderful thing a young lad could have. We have a night nurse for two nights a week, and we look forward to those nights like a teenage girl looks forward to prom.

Please love me!

How is Zeke doing? He's doing great! As of yesterday he's a whopping 6 months old and he is a happy, smiley, chubby boy. I know, describing him as smiley still feels weird, but he is indeed smiley. The boy with the permanent scowl is no more, they must have swapped the kids at some point without our knowledge. He has pretty frequent appointments for the different areas of his health so they're keeping pretty close tabs on him. It's hard to measure specific points of progress currently, so I can't list any landmark improvements right now. But he gets stronger every day. For now, that's enough.

I've had a lot of people ask me when he's getting his trach out. Many of you may be wondering the same thing, I know I am! There is no way of knowing when, or if, that will happen. The doctors have said they think he'll be able to grow out of the trach, but there are no guarantees. He's doing really well, but don't forget that his trach is largely responsible for why he's doing so well. Weening him off it will be a very slow process, so it is here to stay for the foreseeable future. The timing of all this will also affect when he will be eligible for a kidney transplant. 18-24 months is the youngest they will transplant someone, but they don't like to transplant kids with trachs. That means that if he's still trached when that time comes, it could push his transplant back. So there you have it, I just used a whole lot of words to say "We have no idea what's happening."

Carry on, carry on.

That's all for now, thanks for reading!
Caleb

The Fall of a King

Oh, hi!

Can I help you?

So much has happened since our last update I'm not sure where to start. My fingers desire to type out all the events as they happened in hyper detail, but my brain just keeps screaming "TELL THEM! TELL THEM!"

"Tell us what?" I hear you ask. Oh, nothing much... Ezekiel is just coming home on Monday. "Wait, you mean in just a couple days?" Heck yeah, donkey!

Can you believe it? I only ask because I still don't. We just found out this past Tuesday that home nursing has fallen into place and that it is time for our family to finally settle into our life. We had been shooting for the 26th of March as a discharge date, but this had always been a hypothetical date that I was trying very hard to not focus on. Receiving a solid discharge date racked my brain with joy and panic. Those feelings have not subsided.

Chubs McGee

Since last we spoke Jenny and I had been doing all sorts of training sessions and gathering equipment and supplies, but that kicked into turbo mode with this week's news. Our basement has turned into a warehouse of medical supplies and continues to grow as we receive more deliveries. You think I exaggerate, but I do not. I've spent the last 3 nights taking inventory in my own house. I now unofficially moonlight as a warehouse supply manager for several home medical supply companies. 

As far as the little man, he's been doing great. Two weeks ago, Monday the 9th, Ezekiel was removed from his throne in the NICU and transferred to the general care unit. This was a milestone for him as that meant he was no longer in need of "critical" care. He handled it just fine, but his parents seemed to have a little difficulty with this transition. Zeke had been in the NICU for his entire life, it was impossible to imagine him in another unit. This was mostly because we had become selfishly attached to his nurses, doctors, therapists and all the staff in the NICU. These people were there for every monumental step in this boy's life. They saw both Jenny and I weep with joy, sadness and fear on multiple occasions. They had a front row seat to the most serious, emotionally charged months of our lives. Most importantly of all, they admitted a baby boy that was near death and were now sending him off as chubby, scowly, 13 pound hunk. How could we not feel close to these people?

Worth it!

As you can see in the picture above, being in a general care unit has its perks. Ezekiel finally got to meet a cousin! Children under the age of 15 are not allowed in the NICU, unless they are a sibling of a patient, so none of Ezekiel's cousins had been able to meet him.This picture symbolizes a culmination of sorts to me. Our families have been such a huge source of comfort and support during this time that I don't even have the words to thank them. They have bent over backwards to help us, accommodate us, and to just be there for us. Seeing little Stella's joy while holding Ezekiel's hand for the first time seems a fitting way to highlight why it's all worth it.

So here we are, just a couple days from discharge. This weekend both Jenny and I are doing our own 24 hour care sessions, which are exactly what they sound like. We will each be the primary care giver for Ezekiel for a 24 hour period to make sure we are aware of every aspect of his care. Jenny is actually in the middle of her session right now and mine starts in the morning. Wish us luck and I promise to share discharge pictures with you. I can only assume there will be a huge parade or some kind.

Thanks again for reading and for caring about Ezekiel!
Caleb

Birth to kingship

Greetings and salutations!

"My fist tastes like justice!"

Since the last time I shared details of our young hero's awesomeness, he has been crowned King of the NICU and has chosen the boppy as his throne. He has earned this title by being the biggest baby in the NICU, cornering the market on Desitin, and easily defeating all who opposed him in open battle. You may now refer to him using any of the following honorary titles: His Royal Diaperness, The All Seeing Scowl, Grand-master Granuloma, Colonel Sausage Arms, or Darth Zeke: Plague of the Premature. I've asked him which of these honorary titles he prefers, but he simply stares in quiet reflection. The stresses of rulership weigh heavily on his chubby little shoulders.

His justice is swift, but fair

His first royal decree was that he should be on his very own home ventilator. After all, a King cannot be seen as weak in the eyes of his subjects! He's been on the home vent since Wednesday of last week and hasn't had any issues with it. They've even begun weaning some of his settings as he tolerates it.

We had another care conference last week, the focus of which was Ezekiel's path to discharge. At this point, he's almost medically ready to go home. There are a still few other things standing in his way, however. Jenny and I need to finish all of our training, we need to procure all of his home equipment, and we still need home nursing. We've made some progress on all these fronts, but there is still more to be done. The home nursing situation may very well be the one piece that takes the longest to sort out. We've had a home nursing company on the case for a couple months now, but that won't stop me from adding a shameless plug here. It seems that an overnight nurse is the hardest to find, so if you're a nurse and interesting in chilling with a sleeping baby a couple nights a week, let me know!

He's in a bulk phase

I must admit, I first thought a night nurse was unnecessary. I figured that all new parents have to get up in the middle of the night with their kids, why should I expect someone else to do it for me? Sadly, it's not quite as simple as that. Something happened last week that highlighted why this piece of the puzzle is an important one. On Monday, Zeke's trach either became blocked or was dislodged and he couldn't breathe. His oxygen saturation and heart rate dropped quickly. Jenny was in his room at the time and rushed to get Zeke's nurse, who was already responding to his alarms. Even with that immediate response, Ezekiel stopped breathing and his heart rate got dangerously low before they got his trach switched and started giving him manual breaths. They had even called for the code cart, which is a cart with all the supplies needed to resuscitate someone who's life is in danger. The worst was avoided, thankfully, but only because of the quick response from the medical team. If something similar happens when he's at home, we will need to respond just as quickly. We've been trained to do all the things that they did to bring him back, but training and execution are two different things, especially if you've just been awoken from dreamland. I feel pretty good about our ability to respond to a situation like that, Jenny is a respiratory therapist after all, but someone who is awake and already at his beside could make all the difference.

Mama bear and her cub

But let's not get down, things are progressing wonderfully. The All Seeing Scowl is a whopping 4 months old and still exceeding expectations. Jenny and I cannot wait to have our whole family at home. And who knows, maybe we'll even get our dog back at some point... maybe.

Until next time!
Caleb

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