The new year cometh

So many updates, so little time. Let's do this!

Hawk'd up and ready to rock

When last I left you all hanging, we were expecting a surgery in the next couple of days. As that week progressed his surgery kept getting pushed back and was eventually scheduled for Friday the 19th, at 7:30 AM. Ezekiel was to have a vesicostomy and a tracheostomy. We've talked about a trach before, so I'll go ahead and assume you remember what that is, but what is this mysterious vesicostomy? Gather 'round, children, I'll tell you. This is a procedure where an opening is created from the bladder to the outside of the body. They thought Zeke needed this because he still wasn't peeing. He was creating a small amount of urine, but it was just sitting in his bladder. They assumed this was happening because his bladder is severely damaged from being blocked for so long that it was unable to push that urine out. They can always use a catheter to drain it, but this isn't a good long term solution mainly because of its infection risk.

Jenny and I arrived at the hospital bright and early to be there before surgery. The nurse was already scrubbed up and getting ready to wheel Ezekiel to the OR when Zeke's urologist came in and told us that they had decided to cancel the vesicostomy. They felt that it was just too dangerous for Zeke because there was a risk of compromising his stomach cavity. If that happened, they would have to halt his dialysis and that just wasn't an option. Canceling the vesicostomy also ended up canceling the trach. Zeke's need for a trach wasn't emergent and they wanted to combine this with another procedure if possible, to reduce to strain on his body. The likelihood of him needing another procedure in the near(ish) future was great enough that they wanted to hold off for now. We got all worked up for nothin'!

Spoiler alert for the observant

That night we got an infection scare. Ezekiel had a couple dialysis drains where the fluid was very cloudy. Normally this fluid is clear, if tainted slightly yellow. Cloudy fluid can be the first sign of peritonitis, which is a dangerous and painful infection of the stomach lining that makes peritoneal dialysis possible. This is the infection they've been warning us about before Zeke even started dialysis. They said if he got this, they were afraid it would be too much for him to handle. They started Zeke on antibiotics immediately and started running all kinds of tests to verify whether or not he had an infection. The next morning we got a visit from the infectious disease team and they brought bad news. Their tests had revealed yeast in his dialysis fluid. This pointed to the fungal type of peritonitis, which would likely mean his PD catheter would get clogged with fungus and need to be removed. Curiously, Zeke was acting normally, and his dialysis drains had gone back to crystal clear. This had everyone scratching their collective heads, but they wanted to proceed as if he were infected simply because peritonitis ain't no joke. They did more labs, and took another sample of his dialysis fluid. All of these tests came back negative and his fluid analysis revealed no yeast. The original findings were chalked up to an over zealous interpretation of his slides. Finally able to breathe easier, we went home to rest.

No rest for you!

Zeke had other ideas, though. At 3:30 AM, we got a call letting us know that Ezekiel had coughed out his breathing tube! He did this with expert timing. The tube is always taped to his face, but he waited until they were changing said tape and executed his perfectly timed plan. We rushed into the hospital because we can interact with him so much more without that cumbersome tube and he could need it back in at any moment.

"These grey hairs you see are all because of you, son."

Ezekiel continues to surprise us all. Today, one whole week later, he is still without his breathing tube. He still gets a decent amount of support from those nasal prongs, but he's doing pretty well. His ventilator settings have fluctuated and there is still the possibility that he'll need the tube, and perhaps that trach, but for now we're pumped about how well he's doing without it.

I can do so many more things without my tube!

Just this past friday, the 26th, Ezekiel finally got his kidney tubes removed. The next day they pulled his bladder catheter, bringing his tube count all the way down to 3. Not that long ago it was as high as 10! Having all these tubes out makes him easier to handle and interact with. Jenny and I can finally comfort him in real ways instead of just patting him on the head from the side of his bed and saying "there, there, little one." We can now slide our hands under him and lift him slightly off the bed in what I have dubbed a ghetto hold. Rocking him slightly usually comforts him and us!

On the dialysis front, his fill volume has also continued to increase and they should be able to finally use that 90's fax machine they call a dialysis machine in the next few days. I'm sure his nurses will appreciate that since they've been doing it all by hand this whole time!

As you may have heard, this last week was a holiday of some renown, and the NICU handed out some gifts for the babies and their families. Hidden amongst the stack of Ezekiel's loot was this:

A fist bump made for the ages

I wasted no time in reading him the newest addition to his stack of books. The verdict is still out on who enjoyed it more, but as you can see in the picture above we shared our first fist bump for the photo op... how awesome is that?!

Thanks again for reading and for caring about Zeke!
Caleb