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

A whole week of recaps

Oh, Hi there!

I know it's been a little while since we've had update and I apologize for that. If you've wanted to reach out to me and say something along the lines of "wtf, dude, where is my update?!" Don't worry, several people beat you to it. The up side is that this has reemphasized how many people care about our little man even after all this time. This last week has been rather eventful, which has more than a little to do with the delay on the blog updates. Some of the happenings are bigger than others, but lets address them in the battle tested method: chronologically.

Presented without comment

Last Saturday, Ezekiel's due date, the doctors felt that his respiratory status was in such a good place that they wanted to see how he would do without his breathing tube. They have a fancy term for this of course, which is an extubation trial. This didn't mean that he went from full support to none, he still got some pressure support and oxygen through nasal prongs.

Look how happy I am to have my breathing tube out!

Sadly, the trial did not go all that well. He held his own for a couple hours, but then began to deteriorate. At first, they assured us that this was common. After all, Ezekiel has never had to breathe on his own like this in his entire life. We had to give him a chance to figure it out. Later that evening, though, Ezekiel hit a speed bump in the form of narcotics withdrawl. He's been on pain and sedation medication his whole life and those drugs are strongly addictive. They had been weening his drugs slowly over a few weeks, but it finally caught up with him. He had tremors, sweats, and couldn't sleep. After 36 hours of herculean effort, it became clear that this was just too much for him. He was visibly struggling to pull breath and his stats reflected his struggle. He got his breathing tube back on Sunday evening and it was immediately obvious that that was what he needed. It was good to finally see him comfortable again, but failing the extubation trial was more than a little disappointing. 

Last week also brought another surgery.

Ezekiel clearly doesn't think surgery is a big deal

The surgery was a success and Ezekiel handled it like a champ, as usual. By this point, this sort of business has become old hat for him. The purpose of this surgery was to remove the blockage from his urethra, the dreaded PUV. These little flaps of skin are what set off the chain of events that put Ezekiel where he is today. There was definitely something cathartic about knowing that Zeke's urologist zapped them into oblivion.

The next day brought another care conference to discuses his rather eventful week. His respiratory status was first on the docket. After he had failed his extubation trial, his doctors began talking about the possibility of a tracheostomy. A tracheostomy (trach) is a surgically created hole in the front of the throat that leads directly into the windpipe. This provides a more permanent site through which to deliver lung support. During our care conference, all of his providers agreed that Ezekiel would need a trach. This took me a good long while to come to grips with, mainly because the idea of it seems so barbaric. The benefits of a trach have since been clearly explained to me multiple times and we will, as always, pursue what is best for Zeke. There are lots of reasons that this is what's best for him, but perhaps the biggest reason is that all of his doctors feel that he will need lung support for a very long time. Yes, "a very long time" is terribly ambiguous. I share your frustration, trust me!

On the urological front, the immediate goal is to get those tubes out of his kidneys. They've done their job, but they are a potential source of infection and we need to get them out. Their plan is to clamp the tubes and see if the kidneys will drain through the bladder since his bladder blockage is now clear. If that is not successful, Ezekiel will need a pyelostomy. This is a surgical procedure in which an opening is created in the lower back that allows the kidney to drain, thereby bypassing whatever blockage is keeping it from draining to the bladder like it's supposed to.

On the dialysis front, they want to continue to slowly raise the amount of fluid that they put in his belly for each cycle. The goal here is that the more fluid he has on each dwell, the fewer dwells he'll need in a single day.

I'm a baby kangaroo! (A joey, if you will)

The other good thing that came out of the conference was that his PD catheter was now finally healed well enough that we could hold him upright. The very next day we got to hold him, just him, like a real baby. Prior to this he was frequently in a little burrito sack and had to be held belly up on our laps. We loved it, for obvious reasons, but it paled in comparison to the feeling of holding him to our chests. It was simply awesome.

This week is shaping up to be another eventful one with a couple of potential procedures on the horizon. I'd say to stay tuned for another update in the near future, but we may have entered into a boy who cried wolf type of situation...

Until the next time I choose the blog over sleep!
Caleb

The post that's 3 days late

As usual, I promised an update and then left you hanging. It's becoming my thing now, it would seem. Don't worry, my Dad already scolded me. As I am now a father, I feel even more inclined to do as my own father says, if only in a backhanded attempt to get my son to do as I wish. So far my experiment has yet to yield any measurable results. More tests are needed.

Look at mah face!

On Tuesday we had another care conference. With all of Ezekiel's forward progress since our previous conference, our expectations had gotten a little out of whack. It took a little wind out of our sails, but it was yet another exercise in some good ol' fashioned expectation management. With everything Zeke has overcome it's easy to think "hasn't he done enough? Can't we just take him home?!" Sadly, that's still not going to happen anytime soon, but he's still keeping everyone on their toes and making some awesome progress.

"Stop moping about, old man, and fill everyone in on how awesome I am!" Ezekiel said rudely to his father. Fine, jeez, kids these days have no respect for their elders.

Here are a few things that came out of our conference:

• Zeke is scheduled to have another surgery on Thursday of next week. This surgery is to remove the blockage in his urethra. After doing this surgery, they will clamp the tubes in his kidneys and see if the small amount of urine that they are making will drain through his bladder. If this doesn't happen, he'll need another surgery to address that issue.
• They're starting to go up slowly on the amount of dialysis solution they put in him on each cycle. Part of the reason that he needs dialysis around the clock is because they're using such small amounts of solution. To get him on a regimen that manageable from home, they'll need to increase that fill volume from 25ml to around 200ml. They'll do this slowly because they're very worried that the larger volumes will negatively affect his lung function due to pressure it will put on his diaphragm.
• Orthopedics is supposed to be visiting Ezekiel soon(ish) to start addressing his clubbed feet.

In other news, he got off his sedation medication today! They were keeping him sedated because his lungs couldn't handle him being awake, but that's no longer the case, as evidenced by all the new pictures of him with his eyes open!

Frogs make the best hats.

Now that it's after midnight it is officially the 6th, which was Ezekiel's due date. Happy due date day, little man! I've prepared a happy due date song to sing him when I see him in the morning. I expect him to applaud, which would be the only reasonable reaction.

Until next time,
Caleb

Let's do math!

Fair marrow, good people!

A boy was born on the first day of the 11th month. Today is the first day of the 12th month. The number x represents the age of the child in months. Solve for x. Show your work.

x = 12 - 11

x = 1

The boy is 1 month old!

He's been so lazy this whole month. His mother says it's the morphine, I think he just needs some motivation.

Not a whole lot has changed since last we chatted. Oh, except for this:

This boy...

... became this boy!

Even Tony Horton would be proud of these results! Either they did a baby swap, or the dialysis is working.

On the lung front, he's made enough progress that they gave Ezekiel what they call a "pressure support trial". This involved changing the ventilator to a mode that makes Ezekiel do more of the work on his own. Normally the ventilator breathes for him. While he can breathe on top of the vent, it is giving him a set number of breathes every minute. During this pressure test, the vent does NOT give him breaths, it just supports the breaths he takes on his own. Ezekiel had these pressure support trials on Saturday and Sunday and did very well! Today he was a little tuckered out from all the hard work of breathing, but these trials will continue as his lungs get stronger.

Tomorrow brings our care conference that will hopefully have lots of information regarding Ezekiel's care plan moving forward. I'll try to check in tomorrow and let you know how it goes!

Until tomorrow?
Caleb