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