The Great Kidney Swap

Who needs a kidney? Not this dude!

Kidneys are great!

To be fair, just a couple months ago, this dude did need a kidney. Now that he has one he won't shut up about it. We get it, you can pee, sheesh!

Hopefully many of you saw Jenny's Facebook posts and know that transplant was a success. For those of you who didn't know that, well, I think I already spoiled it. What Jenny's posts didn't tell you are the finer details of how it all went down. So, if you wish to hear the tale of the magical kidney swap, strap in. This story is just like the Tower of Terror: exciting, bumpy and speckled with urine.

This journey really started almost two years ago, but I'll assume you've been following along and fast forward to the good stuff. On the morning of July 27th, we disconnected Zeke from his home dialysis machine for the last time and zipped off to the hospital. This first day at the hospital was for blood tests, observation and meeting with the multiple doctors involved with all the surgeries that were to take place the next day. We knew most of this going in, but this was the first time we saw the full list of everything that was on the docket. Here it is:

• Dialysis catheter removal - This tube saved his life. I get a little misty looking at it now (yeah, I kept it). Perhaps you remember reading about all the drama that surrounded its placement. The surgeon that placed that catheter crushed that surgery. The success of this surgery gave Zeke his fighting chance. It was a landmark moment in his life.
• G-tube placement - A feeding tube placed directly into his stomach to replace the one in his nose.
• Hernia repair - He's had a hernia since his days in the NICU. It is a common side effect of peritoneal dialysis.
• A vesicostomy - This is a surgical opening to the bladder placed in his lower abdomen to make sure urine drains properly. His bladder is still badly scarred and doesn't flex to hold urine. He needs this opening to keep urine from flowing back into his brand new kidney.
• Central line placement - A semi-permanent IV site placed in the artery in his neck. This is necessary for administration of medication and for drawing blood to check his numbers for the weeks to come.
• Kidney transplant - Oh yeah, that. The whole reason for this song and dance.

If that seems like a lot, that's because it is. Michelle was also at the hospital that day for her own last minute tests. It was great to spend some time together. We measured the kidney several times to make sure it would fit. You know the saying: Measure twice, cut once. That applies here... right?

Pretty sure it will fit...

After a day full of doctor check ins and signing consent forms for the above procedures, we all attempted to get some sleep. Zeke and Michelle were first on the docket for the next day which meant a very early start. Michelle got checked in at about 6AM and the team came to collect Zeke just a half hour after that. We got him disconnected from his very last dialysis treatment just in time.

Disconnecting for the last time!

First they took us to a pre-op room, where they went over everything one last time and gave Zeke a little happy juice to calm his nerves. Have you ever seen a drunk 1 year old? That is essentially what this juice did to him. He was hitting on all the nurses and calling everyone "bro". It was embarrassing. After Zeke's 3rd round of beer pong, it was time to get the show on the road. I won the coin toss, which meant I got to carry Zeke back to the operating room. In his drunken state, he wasn't scared at all. Instead, he seemed intrigued by the new sights and sounds. I was allowed to stay with him until he was asleep on the operating table. I left the operation room at 7:40AM. My feet felt a little heavier than usual as I followed my guide back out of the labyrinth to join my wife and family. My parents and brother, Jenny's parents and Michelle's husband, Josh, all came to stare at the clock with us.

Sup, bro?

There was a lot of staring. Everyone had brought something to distract themselves with, but none of it seemed to do a very good job. We waited. Then we waited some more. At around Noon, Michelle's portion was complete and she was settling in for some much needed sleep. We sneaked in for a quick visit and to thank her for her priceless gift, but nothing held her attention. She had one of those patient controlled pain med buttons that she clutched like it was the One Ring. Thankfully, no tricksy Hobbits showed up to steal it from her.

After our brief visit with Michelle, we returned to our waiting. At around 3:30PM, his transplant surgeons had finished their portion of the procedure and sat us down for an update. The kidney was in and they said it started making urine before it was even connected to the bladder. When they had left the operation room, the plastic surgeon was closing the surgical incision. I didn't realize they had a guy that closes major openings like this, but I'm clearly out of the loop. Once Zeke was all sewn up, they decided to take him straight to the ICU instead of spending any time in the post operative area. It took some time to transfer and get him settled. At 6:30PM we were finally able to see him. I expected to fall apart into a blubbering mess when I saw him, but that didn't really happen. It was emotional for sure, but it didn't feel like it was over. This was likely because he was still unconscious, had a breathing tube in his mouth and was being assisted by a ventilator. The flashbacks to his early days in the NICU were inevitable.

Nothing soothes an unconscious boy some some head rubs.

He looked a little rough, but what else could you expect after going through all of that? Everyone visited a bit and then headed off for some rest knowing that surgery had been a success. Over the next few days there were long stretches of nothing mixed in with short periods of far too much excitement. Zeke was kept unconscious because he still had a breathing tube. This was partially because he was recovering from his surgery, but also because he needed to stay extra hydrated. Their term for this was "juicy", which I thought was quite appropriate given the look that accompanied the term.

See? Juicy.

He needed to be "juicy" because his new kidney was used to processing enough fluid for an adult, which is more then a 1 year old normally has in their body. Michelle's kidney needed time to adjust to the needs of it's new host. This extra volume meant that his lungs were under extra pressure. That, combined with his congenital lung issues, made breathing difficult and the tube/vent necessary. Zeke didn't seem to like being reunited with his old friend all that much, however. On three separate occasions, he displayed his displeasure by baring down on the tube and holding his breath. Since he had a breathing tube in, they were always able to get him breathing again with little trouble. The docs weren't super clear on why this was happening. Their best guess is that he is as stubborn as a mule and simply wanted to be free of the breathing tube. Since everything else looked good, they granted his request.

The story of what happened next has waylaid the completion of this blog for months. I haven't really wanted to relive this bit, nor have I been sure how exactly to tell it. But one can only hide for so long.

Just a few hours after the breathing tube came out, Zeke once again proved how stubborn he can be. During one of his routine breathing treatments, he went full hulk-mode. Just like before, he bared down and held his breath. This lead to bronchial spasm and a collapse of his airway. Without the assistance of the breathing tube, getting air into his lungs proved challenging. The fact that he still had an open hole in his neck exacerbated the issue. The air that they were forcing into his mouth and nose was escaping through the hole is his neck instead of inflating his lungs. They called over the hospital PA for anesthesia as his room filled to the brim with medical staff. The plan was to knock him out so he would relax and they could get that breathing tube back in. In the meantime, his oxygen level dropped all the way to 10. The only time I've seen it that low was on his third day of life during an equally scary episode. They were eventually able to stabilize him, thankfully. I can't even tell you how long the whole ordeal lasted. My mind went numb as I tried to not picture the worst of outcomes.

Now that they had that breathing tube back in, we all assumed he would return to his previous shenanigans. To prevent that, they decided that putting his trach back in was the best option. Seeing him with his trach again was disheartening for sure, but it did just what we needed it to do. It stabilized his airway and kept the hulk at bay.

Sure, he looks sweet here...

The rest of his hospital stay was, thankfully, far less eventful. There were ups and downs with his lab values and urine output, but things progressed nicely. He did so well that they were even able to remove the trach before sending us home. We had feared that we'd be back to the trach and vent and everything that came with it, but thankfully that didn't happen. We brought our little monster home with his shiny new kidney exactly 2 weeks after surgery.

In the months since transplant, Zeke has had a full schedule of appointments and has even landed himself back in the hospital a couple of times for short(ish) stays. His biggest issue has been getting that new kidney to drain properly. He has had one followup surgery and countless ultrasounds and tests to check the kidney and its function. It has been a little more wild than I had imagined, but things have finally calmed down a bit. The kidney is doing well and so is Zeke. He has made some huge developmental steps since getting his kidney as well. With his new found energy, he's crawling and walking with assistance. Without the constant nausea, he is also interested in eating. I think he's little confused, though, as he seems to think he's a mother bird. He doesn't swallow his food and instead chews it up and spits it out. It's as adorable as it is disgusting.

All of this food has been in my mouth. I have eaten none of it.

What's next for our fearless hero? As far as his medical horizon, there are only a couple of things left on the docket. First up, he'll need to get his stoma surgically closed in the spring. Eventually, his bladder issues will need to be rectified as his vesicostomy is not a permanent solution. They'll likely reconstruct his bladder, but that won't happen for a year or two. Other than that, it's time for him to grow and get stronger! All things considered he's a happy little two year old boy.

What about Michelle? She's doing great! They sent her home just a couple days after transplant. As she sauntered out of the hospital, she turned to Jenny and said that it wasn't as bad as she thought it would be. I'm not really sure how to respond to that other than to say she is a bad-ass. She gave away an organ, walked out of the hospital a mere two days later and shrugged it off as if it were no big deal. I have to disagree with her, though. It was a big deal, nay, a HUGE deal. Zeke totally owes her.

Kidneys reunited

That's the tale. Thanks for hanging in there all the way to end. For your dedication, I give you one last picture of the boy who can pee.

Kidneys give ya wings!

His journey isn't over, but the most exciting parts have now been told. Thanks to everyone for the continued support and all the good vibes sent our way. An extra thank you to our families for all the moral and physical support through this roller coaster ride.

As always, thanks for reading and for caring about my main man, Zeke.
Caleb

Get That Thing Outta Here!

Who needs a trach? Not this guy!

Our little Superman, prepped for his big day

Decannulation was a huge success! Zeke rocked it like he has everything else, which means he turned it up to eleven. When you need that extra boost, you gotta take it to eleven. The day wasn't quite as full of pomp and circumstance as I expected, but I will take it. After first scoping his airway to make sure there were no obstructions, we got the go ahead to "make it so." Jenny did the honors and pulled the trach out with expert care. Were there fireworks? Were there the cheers of adoring crowds? No, there was not. Zeke coughed and then went back to Mickey Mouse, seeming not to notice.

Our first family shot sans trach

Zeke had to spend the night in the hospital for monitoring, but did amazingly well every step of the way. He still needs a little oxygen at night and during naps, but that will hopefully disappear over time.

The success of decannulation also means that it is kidney time! The transplant team wasted little time in picking a date. Are you ready? On July 28th, Ezekiel will get a new kidney. That's right, they will take a kidney out of his Aunt Michelle and slap it into his abdominal cavity. This still seems like black magic to my primitive caveman brain.

"Do ya mean it, Pa? I can have a kidney, for true?"

Transplant will be such an amazing step for his health, I really don't know what else to say. It feels like this is the end of his journey. After all he's been through, I wish that were true. But let's not forget that his path from here is much brighter, and less covered in puke. I dread waiting the 5 hours for him to emerge from surgery, but I wiggle with excitement at the thought of seeing him on the other side. Something tells me you do too.

A sincere "Thank you" to all of you for your continued support. It means the world to Zeke and his Mom... and his Dad.

Caleb

Tomorrow is Only a Day Away

Hark, who goes there!?

As always seems to be the case, much has transpired since last we spoke. It would seem as though I should update you all more often. Although, keeping you in suspense (or "suspenders" as Goofy would say) is so much more exciting.

"Oh hey, didn't see you there."

Last time we talked Zeke was nearing decannulation (the removal of his trach). Sadly, just days before that process was supposed to be scheduled, he got sick. We were able to manage his symptoms at home for the first day or so, but come that Sunday afternoon, we could no longer keep his oxygen numbers high enough and had to take him in to the ER. He was admitted to the hospital with a respiratory infection called RSV. I paid close attention when those results came back so I can tell you that RSV stands for Respiratory Somethingsomething Virus. S-M-R-T! What that meant is that he had some inflammation in his lungs, and without the adequate reserve lung function to make up the difference, he needed support again. He ended up back on the ventilator and quite a lot of oxygen. There wasn't much we could do other than let the virus run its course. After 12 days in the hospital, his oxygen needs were finally low enough that would take him home.

Hospital oxygen just tastes sweeter

While in the hospital, we had a care conference to talk about what this illness meant for his timeline. It was obvious that, at the very least, decannulation would need to be pushed back a couple of months. It was possible that he would need even longer to recover, which could potentially push everything back to next year, transplant included.

While we were distracted with all of that, Zeke was plotting. As part of his prime directive, he sent us into a worry spiral. While we were busy fretting, he was busy destroying the viral invaders. After a couple weeks at home, he was able to be weaned off the vent and has now been completely off for several weeks. He's doing so well that I think we're going to pull his trach out tomorrow. He doesn't need it anymore and Jenny and I have decided it's time.

Bubbles can be enjoyed with or without a trach

Ok, fine, we didn't decide it was time, his doctor did! On Tuesday the 21st, Zeke is scheduled for decannulation! They'll have to scope his airway first, but as long as that all checks out, that trach comes out. This is such a huge landmark for him and his health... what else can I say, the dude is a rockstar!

This is all excellent news for transplant as well. With his bladder fixes on hold until after transplant, only the trach was standing in his way. If all goes well on Tuesday, he could get his new kidney in late July or early August! Where is he going to get a kidney from, you ask? Oh, haven't you heard?

"Hey, Aunt Michelle, look into my eyes. You are getting very sleepy. You will wake up in a tub of ice, missing a kidney. Do not be alarmed."

I want to take this opportunity to thank everyone that got tested and those who offered to get tested. It means more than you know. Most of all, though, we have to thank Michelle. I've said it before and I'll definitely say it again: Getting a kidney will transform this boy's life. The constant nausea, the puking, the lack of energy, the discomfort, the dialysis: gone. How amazing is that? This truly is the greatest gift she could ever give to our son. In return, we'll give her... uhm, I don't, uh... Well, I guess we can make Zeke write her a card every year on her birthday, or maybe just a case of beer. Yeah, we got this.

You are a Jedi. Like your father before you, and his father before him.

I promise to update you all on tomorrow's events as soon as it's possible. Until then, try not to stay up all night worrying (I'm looking at you, Jenny)

Caleb

A Year in the Making

Come one, come all, a tale I shall tell. It is a tale of a young hero, surrounded by peril... and toys.

This entry says it's a year in the making because on the 23rd, Ezekiel will have been home for one whole year. As is normal for any child his age, many things have changed in a year. Behold:

Where once there was chunk...

... now there is hawk

Since the last time we talked about Big Baby Z, many things have happened. He had just started spending time off the ventilator and now he's off around the clock. Once he progressed to being off all day, he had a sleep study done at the hospital and was cleared to be off at night as well. He now sleeps with just some heat and humidity delivered via a trach mask to help keep his mucus from getting thick and blocking his airway. He still needs a little oxygen at night, but that shouldn't keep us from progressing to the next steps. What is the next step, you ask? Why, getting that trach out, of course! Assuming there are no hiccups, they're hoping to pull his trach in late April. They'll go in with a scope to check out his airway, and if that all looks good, out it comes! How awesome will that be?! This will have such a significant impact on our daily lives I'm not even sure where to start. We will finally be able to have babysitters that aren't specifically trained on how to manage a trach, or more simply stated: family. We've decided to hold our very own Hunger Games to see who gets him first. All the trach related equipment will be no more, allowing us to move about the house more freely and travel without loading the car down with emergency supplies. Oh, and the obvious upside to his overall health and well being, can't forget that one.

"Reveal your secrets to me, you blasted contraption!"

I mentioned last time that he might need some help with the bladder, and that has since been confirmed. He went in for some tests and those showed how bad his bladder really is. The excessive swelling in utero caused the bladder wall the scar and the lack of use since has caused the entire bladder to shrivel. There has been talk of a surgery that would use Ezekiel's own ureters to expand the bladder, but that specific procedure is still being debated. What we do know, is that his bladder needs some help, the exact help is still TBD.

He got some on the paper... 20% would be a generous estimate

On to the biggest, baddest piece of them all... the kidney. This drama on the kidney front has continued unabated. I have since been removed from the donor pool and Jenny is back in as a last resort. My brother Micah and cousin Adam were in, then out, and now might be back in (or out). Jenny's sister, Michelle, is currently the next one up to bat for her all day evaluation. These are just the highlights of all our kidney drama. There have been canceled evaluations, evaluations that were cut short, and someone has been playing dosey doe with our donor order. It could be any one of these people, or maybe none of them, who knows. Whatever the outcome, Jenny, Zeke and I will be eternally grateful to them for their willingness to go through so much for one so little. The generosity of this act cannot be overstated, so no matter how many kudos I give them in person or on the world wide web, it will never be enough. Getting a kidney will transform this boy's life and for that, we cannot wait.

Catch!

That's probably enough sap for now. As my main man Yoda would say, "Judge me by my size, do you?"

Caleb

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.