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