Bigger, Stronger... Faster?

They say practice makes perfect, and this kid has been practicing for this moment for his whole life.

Notice anything?

For those of you that may need more of a hint than just the above picture, Zeke is now spending time off of his vent! When last we talked, he had just started his weaning process and now we've reached the third stage. This time off the vent started last week with 15 minute intervals and has increased to nearly over 3 hours a day. We will continue to increase until he is off of the vent for all waking hours and then we'll start weaning his support while sleeping. Having him off his vent is just amazing. We finally get to hold our son without any tubes or cords getting in our way. We celebrated this occasion by running around this house with Zeke held high, superman style. We usually just camp in one room for the majority of the day since moving all of his equipment is time consuming, but no more! Now the world, or perhaps just our house, is his oyster. Along with this progress comes another first:

Wait for it...

During these times off the vent, Zeke can use a speaking valve! This is a one way valve that allows him to breathe in through the trach but forces him to exhale through his mouth and/or nose, allowing him to talk. He's been making little noises past his trach for a while now, but it's a lot of work to do it that way. With the speaking valve attached, he babbles away like a crazy little man. Hearing his voice is just awesome. For now he's just making random noises, but that's where we all start. Some of us barely ever make it past incoherent blathering by adult hood, so we're not too worried about him catching up.

Milo is creepin'

Now, on to the kidneys... or in this case, the lack thereof. We have now taken a few steps towards transplant. Zeke had his first transplant evaluation about a month ago, which was an all day appointment that was largely informational. We met with lots of people to talk over the specifics of how this will all go down. Spoiler alert: It's going to be terrifying. The other thing that happened that day is Jenny and I were tested to see if we were a match with Ezekiel for kidney donation. Jenny and I both passed the first step, but sadly Ezekiel has some antibodies to some of Jenny's blood, which means she won't be able to donate this time around. That's alright though, she's already done so much for this kid and she doesn't really need another scar. Just a couple weeks ago I went on to the next step in transplant evaluation, a full day of tests. The thrust of this day was to give me a total work over to make sure that I'm healthy enough to give up a kidney and go through a major surgery. We also got another round of information, this time geared towards the donor instead of the recipient. We're still waiting on some of the results from that day, so we'll hopefully know more soon. If I pass this round, then there will just be one more round of tests as transplant gets closer to make sure everything is still on the up and up. If it all checks out, I've been told they'll scoop the kidney out with a giant ice cream scoop and duck tape it to Zeke's side... pretty sure that's how it works. As you can see, I was paying close attention during both transplant appointments. Top of the class!

Kidneys are not required for standing.

Another thing that has come back into consideration is Ezekiel's bladder issues. His bladder was badly damaged at birth from the stress of being overloaded in utero. This is important because it doesn't make a ton of sense to plug a new kidney into a bladder that's incapable of doing its job. To that end they did a bladder ultrasound recently and discovered, though being no surprise to anyone, his bladder still looks to be in rough shape. They'll have to go in with a scope before they can be certain of the extent of the damage, and the results of that scope will determine what sort of treatment he will need. Apparently they can go as far as building him a new bladder using some of his small intestine! I've decided that the only way this could be possible would be with the use of black magic. On an unrelated note, I've started collecting goats. If you have any to sell I'll take them off your hands. I promise they'll be treated well... super well.

"I already did 50 push ups this morning, 51 is a running total."

Other than those silly medical things, Zeke is doing awesome. His physical development seems to have kicked into high gear in the last few weeks. His newfound freedom from the vent has definitely helped. Without his vent circuit in his way, he'll roll across the living room and cruise through the kitchen in his walker. Before long, we won't be able to keep track of this little monster.

Movin' and a groovin'

That's it for now! As they say in the biz, may the force be with you.

Caleb

We've Missed You

Many moons have passed since last we spoke, one of them was even red! What's our young hero up to?

Enjoying his first beer, that's what

It's been a good long while since our last update, for which I apologize. I wanted to make sure I had something more interesting than new teeth and nights full of baby vomit to share with you, and now I have just that. Since Ezekiel's respiratory status is driving this ship, let's start there.

A few weeks ago, we started the weaning process. We were waiting for him to be able to sit up on his own, and now he finally can. At first, this entails simply changing the respiratory rate on his ventilator. His vent does two things for him currently: it provides breaths from start to finish needing no input from him whatsoever, and it also supports any breaths he takes on his own. The first step of the weaning process is to slowly reduce the number of breaths that the vent gives him, forcing him to initiate more breaths on his own. That number has dropped a couple times and will continue to drop as he tolerates it. So far, he has handled the wean pretty well. Once we get to spot where Zeke is initiating all of his breaths without issue, we can start trials off of the ventilator. This is exactly what it sounds like, we'll actually detach him from the vent for very short periods of time. This is a landmark step in his development. Don't forget, this boy has never breathed without support in his life (save for the quick periods when he's detached for trach changes and what not). If he does well, the time he spends off the vent every day will slowly increase until he is free of the vent all together. Zeke's primary lung doctor feels that if all goes well, he could be free of his trach and vent as soon as next summer! This would obviously be best case, but it's very exciting to be working toward this goal.

The "Little Chief" trying on his Great Grandfather's Fireman's Helmet

This timeline also affects the timing of his transplant. I mentioned this before, but just as a quick reminder, he needs to be trach free before he can get his kidney transplant. So, if his trach comes out in the aforementioned timeline, he could potentially get his kidney next summer/fall! The transplant process is rather lengthy so it's kicking off soon, we have our very first appointment at the transplant clinic later this month. This is a long (4-6 hour) informational appointment where we will get the low down on all the steps to come.

If all of these things go well, he could free of all of his tubes as soon as fall of next year! That's obviously a little hard for us to picture, but man will that be awesome. With a new kidney, he'll finally have more normal energy levels and be free of the constant puking. It'll be like meeting him for the first time all over again.

"Hug me while I drive."

Now that we have the big things out of the way, I'll throw down some more details if you care to continue to read about our offspring. The little monster has a few teeth now and likes to show them off. He still gets weekly physical and speech therapy. His physical development is coming along slowly, but they're pretty pleased with his progress. He's definitely behind, which can be a little tough to deal with, but the fact that he's making progress is the more important part. His speech development has hit more a snag, sadly. He was eating orally pretty well for a while, but a few weeks ago he stopped taking anything by mouth. Nobody is really sure exactly why this happened, but apparently this isn't terribly uncommon with kids who have had an oral aversion.

3-0, baby!

Lastly, I have an exciting story that relates to Ezekiel's prime directive: my ulcer. He normally gives us plenty of reasons to overreact and obsess about relatively minor issues, but about a month ago he decided to step up his game. The story starts in the middle of the night, as all good stories do. Zeke was having a rough night. Rather frequent retching and puking are a nightly occurrence for the little fella, but this night was especially bad. Jenny and I take turns sleeping in his room on the nights we do not have nursing and we had just made our 4AM switcheroo. Neither Jenny nor Ezekiel had slept for the first half of the night due to Zeke's obvious discomfort. Minutes after I took over, Zeke began retching again and what he produced advanced his prime directive by a few weeks: blood. The poor little guy had a bloody puke, followed shortly by another, much larger, one. I woke Jenny since she had been sleeping for all of 5 minutes (lazy!), and we rushed to the ER. He had another bloody puke in the car, but once we got the ER, it had stopped. They quickly ruled out some rather serious possibilities that can cause bloody vomit, but wanted to admit him given his complicated medical history. He spent a full 24 hours in the hospital and in the end, they assumed his feeding tube had caused a laceration in his stomach that had since closed. He apparently just wanted to spend a day with his old friends back at the Children's Hospital. All in all, he got a couple new meds to help prevent it from happening again and they sent us on our merry way the next morning.

Puking blood ain't no thang!

Today Ezekiel is 11 month's old, so I leave you with a picture from his mother's birthday a few weeks ago.

"I got you this card, and these magical flaming cupcakes!"

Until next time!
Caleb

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