Saturday, July 23, 2022

Judah Update

 I'm sorry I never did explain all that going on with Judah after his ultrasound and appt in June. I'm working on a comprehensive post with all the specifics and a recap, but it's taking a while and I'm riding in a car which makes it hard to see the computer screen.

The short recap is that things aren't looking great, but certainly could be worse. His kidneys are still doing their job at the moment. 

He had an ultrasound Thursday, and we have a telehealth with his urologist, Dr. Park in Wednesday. 

The plan from last month was to give things another month to see if they were just taking their time improving post- surgery. The unfortunate reality is that things look worse this month. The right said isn't doing as badly as the left, but it's still progressing in the wrong direction. 

The surgery reconstructed his ureters to make them shorter and thinner, and adjusted the location that they entered the bladder. The idea behind this was to hopefully cure the reflux that was occurring up into the kidneys. His kidneys have continued to function at optimum levels and that is the entire goal- keep the kidneys healthy. However, his bloodwork in June had a number of flags that have me a little worried. His nephrologist isn't worried at this point, but I am worried because they are numbers that were previously perfect and are now elevated. 

As of this ultrasound, his kidneys have more fluid than pre-surgery, and his ureters are both significantly wider than pre-surgery. The left side is really struggling. 

We will see what Dr. Park wants to do next week. We expect, based on last month's conversation, that he will want to do a MAG-3 scan to check for blockage. This requires nuclear material given through the IV and then imaging continuously done to watch it travel through his system. It requires immobilization for the duration, in addition to that IV that continues to be such a difficult endeavor. And it isn't quick, since it starts with the intravenous administration of the material. Pray for him and his medical team, as this will certainly be a rough experience. 

If there is a blockage, we expect that will mean opening him back up. We also expect that would mean stents again, so another round of anesthesia to remove them. 

At the end of the day, there's debris in the bladder, debris in the left kidney, and SO. MUCH. FLUID. It's excessive everywhere. And this kid just doesn't sleep. It's hard to know what is related to his urinary tract and what is food related, but this mama is so tired. I'd really just like to try cathing to see if reducing the pressure helps. I also realize cathing would be a monstrous job with an 18-mont-old who doesn't even want his diaper changed. 

The whole thing is obviously upsetting. We know that the surgery was the best choice given the info we had at the time, but it certainly seems like it did a whole lot of damage. We appreciate all the prayers- for Judah, for us, and for Dr. Park as we come up with a plan to move forward. 

Thanks to all of you for always showering Judah with so much love. And for reading my long‐winded posts!


Ultrasound was kinda rough, despite everyone's best efforts to keep him distracted and happy.



Precious little profile. 

Tuesday, July 12, 2022

Strawberries


Clingy Baby plus 16 pounds of strawberries that you don't wavlnt to throw out lay lead to this... help.  

New videos

I know I'm so far behind. Here's some more recent videos of Judah. I still haven't solved the full phone memory issue but keep deleting a couple apps at a time to record a little bit...







Walking and Climbing! (Father's day weekend. )

Walkie, Walkie! (Couple of weeks ago.)

Marker! (Today.)

Photo to accompany Marker.  This sweet kid just came Walking down the hallway as if nothing was up.  


Saturday, July 2, 2022

They Fell in the Water!

I went into Selah's room to say good night tonight, and stepped on some wet pants that were on the floor. 

Me: Selah, why are there wet pants on your floor?selah: They fell in the water. 
Me: THEY fell into the water? Alone?
Selah: well.....
Me: If we could at least work harder on not having wet clothes on the carpet, that'd be great. 

Some things never change. Expectations clearly do. I'm not even going to ask where this water was, as the pond is mostly dried up and I probably just don't want to know. 

I'll save you the photo of her room that requires I step on many things to get to her bed, and leave you with some oldies thanks to Facebook memories. 

10 years ago...Selah was 3.

Sharpie. Of course.

Same day, different hour. Making herself a present. 

And 8 years ago, sweet Micah was 4 and woke up while I was in the shower. It was clearly quite early as he fell back asleep waiting for me. (The sun is up at 5 this time of year in MI!)