Man, was it good to get home yesterday! As soon as we got in the truck, Judah said, "We should celebrate by getting a muffin."
Judah's Journey
Pursuing and embracing a life of surrender.
Monday, June 28, 2021
Double Update!
Sunday, June 27, 2021
From the 5th Floor: the morning after
Bible next to me, computer on my lap, vanilla latte in hand, and Judah giggling at Office bloopers. All is right in our world again. I realize that is slightly dramatic, but it's really not far from the truth. I have found so much peace and comfort between the pages of my Bible and the keyboard of this computer lately. And coffee. And one of my favorite sounds is Judah's laugh, especially after a rough day.
He had a good night last night. He woke up all Mr. Personality at 6:20 this morning and has been loving the extra attention! And the hospital food. Weirdo. I love listening to him interact with other adults. I really never know what he might say, how he will answer a question, or which member of the family he'll tell something embarrassing about. So far this morning he told his nurse an embarrassing baby Eli story, told the doctor how bad Ezra smells after football practice, and has told everyone about Puppy Charlie.
The good news is that there is no indication of some serious underlying something. No signs of infection. No glaring reason for his sodium dip yesterday. It appears that his endocrine and metabolic complexities just got the best of him. I've learned a couple things that I'll take with me moving forward, so next time I'll hopefully be able to prevent a trip up here. As long as his endo isn't concerned with numbers today we'll be able to go home.
Now that Judah knows I'm writing in his blog he keeps asking me what I'm saying about him. Haha! And he wanted me to read all the comments from FB. His face lights up and he just grins as he listens. If you all keep cheering him on so well I might have a hard time getting his head through the door! He loves hearing from all his people. But he's getting a little antsy, because I told him as soon as I was done writing he could use my computer to watch Mickey Mouse Clubhouse.
I continue to log things that I'm thankful for, and it's incredible to experience the feeling of being filled full that comes with that.
Thank you for praying and cheering Judah on!
From the 5th Floor
I haven't written from this vantage point in a long time! We've been out of the ER and hospital stay rhythm for so long, it feels really weird and brand new all over again. But what a great problem to have.
I don't have much to say at the moment. Although, I think every time I say that I end up going on and on about all the things, so...we'll see.
Judah is sleeping comfortably for now. The main concern is his unexplained low sodium level right now, so they'll do a finger poke in another 20 or so - he should pass out easily again after that and hopefully sleep right through vitals the rest of the night.
The fluids and med they pushed through the IV perked him up some. Enough to explain to his nurse why he named his leg bag "King George III" and get hungry. Where else can you get chicken nuggets and fries delivered to your room at 10:30 at night? He practically inhaled that, but then passed out pretty quick. Eating dinner was just a little taxing apparently.
I was weepy down in the ER when the doc said, "admit". Really sad and disappointed, on top of tired and hungry. It was embarrassing to cry in front of the doctor. Judah's chart outs me as a seasoned mom who knows the ropes. One little overnight should not be a big deal. Get it together, lady! (Thanks to the Office Ladies podcast I now call everyone lady.) I knew in my head that I wanted to handle this differently. No, we have not been here for a long time and it feels a little like starting something unpleasant all over again. However, I decided that I wanted to experience thankfulness and light. So, clearly something needed to change.
Here's the deal: God totally started showing me all these little things that I could be grateful for. He just...showed up. Carried me. Comforted me. It's hard to explain. It's not like I did anything super spiritual. He really just provided exactly what my heart needed - little things every few moments to carry me through - and gave me eyes to recognize it. And through that He calmed my spirit.
So, here are just a few things that I'm thankful for:
Child Life Specialists
Fuzzy blankets from Grandma's house
A son with a tender heart
A daughter who packs an overnight bag as if she crawled inside my head and knew all the things I would need AND all the things I would love, but wouldn't have actually packed for myself
A granny that delivers
Quiet
A room with a view
A male nurse
My Bible on the windowsill next to me
Ridiculously large avocado blankets
Rest for Judah
Community
OK, I'm tired. Vitals and finger poke and morning will be here before I know it. And then Judah will be up and asking for breakfast. Because for some reason, hospital breakfast is magical and marvelous to him. No idea. But I love that he loves the little things, too.
Yeah, that was definitely more than I thought I had to say.
Well, at least I'm consistent.
Saturday, June 26, 2021
Snagsville
So we’ve hit a snag. Maybe. I don’t officially know yet.
Judah has been lethargic and sleeping all day. When he fell back to sleep this morning after 7:30 I thought, “Well, yeah, fireworks season. Interrupted sleep because of interrupted schedule. Not weird.” When he woke up and then went back to sleep at 10 I thought, “Hm.” When he was still sleeping at noon I knew something was not right. For Judah, sleep can be an indicator that his body is fighting something, or something is brewing. The only variable that is different right now is dear King George, a.k.a. the Foley. After talking to the on call urologist, Jared, and our resident nurse (Mom), my gut still said “Warning! Something’s not right! Go, mama!”
*****
Aaaaand the dr just gave me the report. To catch you up, I brought Jude to the ER to get checked out, thinking UTI maybe. They’re keeping him overnight. I fought it, I lost. Low sodium and wonky electrolytes which can be dangerous for this little mister.
So that’s not at all how I thought this would go. We haven’t been in this place - ER, admitted - in a long time. Thank You, Jesus! Seriously, I have been so thankful for how well he has been these last few years. Even amidst the ups and downs we’ve managed at home.
Judah is thrilled that we get to have a sleepover together. Because Mom is still his favorite person and the one he would always pick to have a sleepover with. I, however, and feeling a little differently about that. I will say though, that I’m lying in this hospital bed in the ER snuggling my sweet boy with no tv, no music, nothing. Except of course this quick post. And honestly, I’m kind of loving it. He has pulled away from me a little this year, so to have several hours of just holding him… And knowing that there’s nothing serious or really scary going on…
I’m reading Ann Voskamp’s “1,000 Gifts” right now. I actually read her chapter about the gift of time while waiting for the dr here. How we hurry, hurry, hurry and miss out on the beauty of moments because we’re not present there. Fully present and engaged. And here I am being forced to do nothing but wait and snuggle and choose to be present and see God and His grace and goodness here. I will cry, because I’m sad and tired and I would much rather be at home. But seriously, I have so much to be thankful for and I am not alone!
Monday, June 21, 2021
Graititude, Pups, & Rapper Names
For those of you who have checked in this last week...and for posterity's sake...
Things are going well! We've made it through our 1st week with Judah's new friend. His constant companion. Yes, I'm referring to his leg bag for the Foley. Jude decided to name it. Because that's what Stewarts do. We name things. Vehicles, chickens, air pods, leg bags. He decided he wanted to name it after "the British monarch who riled up the Colonists". Meet King George III. More affectionately referred to by his rapper name: KG3. I love this kid.
What I'm thankful for today:
No signs of infection.
No big messes.
No leaks at church yesterday.
A great attitude and sense of humor and the ability to laugh. And make others laugh.
1 whole week down.
The opportunity to learn and experience something new.
A mom who is willing to learn the ropes so she can tuck him in and we can have a night out.
One week to go and then we bid King George farewell and hopefully receive further clarity on next steps.
Just can't get enough puppy snuggles these days. I'm thankful for Charlie Tanner today, too. |
Monday, June 14, 2021
From the Waiting Room II
I wanted to get this out quick before Judah starts waking up and I get to go snuggle him.
The procedure went quickly and smoothly. Long term good news: there is no visible obstruction and his ureter actually looks good. ("Good" according to his current health stauts. But still good.) Short term bad news: there is no visible obstruction, so we move on to plan B.
The urologist was actually very encouraging about everything, and he feels good about what he saw. However, Jude will come home with a Foley catheter today, wear that for 2 weeks, and then we'll be back here for follow-up blood work and renal ultrasound. There remains a concern that his bladder could be the cause of the extra dilation in his kidney. To be sure, we're taking these next steps. It's also possible that the way Judah's whole system is put together, the comoplexity of it all, is just...that. Complex and unhealthy and not what you normally see. Sooo...in a couple weeks I may actually have more questions than answers, but I continue to trust in the One who formed every single part of Judah, the One Who Sees. He knows the answers, knows what Judah needs, and I believe He'll continue to lead us in decisions as we go along.
But guys. A catheter for 2 weeks? Jesus, take the wheel.
From the Waiting Room I
There isn't really anything to report yet, but I would be remiss if I didn't take this opportunity to write down how God has met us here today.
Judah was more anxious this time. Covering his ears, tears, holding on to Mom. The staff was so kind and thoughtful of him. Attentive to his needs and how they might help. I'm so thankful for that.
When the nurses came to get him he started crying and holding on to me. We prayed with him. But right before they started wheeling him out I thought to say that I bet the nurses would love to hear about his brothers! His tears dried up instantly as those nurses started asking him questions about his brothers. Praise Jesus for the gift of brothers who love Judah well, and whom he adores! And I'm so thankful that the Lord gave me that thought!
A nurse walked us out to an area of waiting that we never sit in. Seriously. Never. We walked over to a bench, having no idea of the divine appointment that God had ordained for us and the younger dad we were about to meet. What a tremendous gift to sit with Casey and hear a small part of his story and what brought him and his wife to Childrens. To have "church" in the middle of the Childrens lobby. To encourage each other and pray for each other. Man, that's cool. I absolutely love how God moves His people and how amazing it is to meet brothers and sisters in Christ wherever we are. God, thank You for this gift today. For this tangible way that You provided comfort and encouragement for our own hearts, through the privilege of comforting and encouraging another. Would you take a moment to pray for little Arrow? He was born on Judah's birthday - June 4 - and is still in the NICU.
Our Sovereign God does all things for our good and HIS glory. For HIS Kingdom purposes. That is a beautiful Truth to find rest in.
CYSTOSCOPY W/ RETROGRADE PYELOGRAMS
Those are some fancy words for: It's Scope Day!
Thank you to every one of you who has already been praying for this day! Judah is nervous, but OK. He knows he's getting a test today that he gets to sleep for, and that's all the information he can handle.
Thanks to some smart mom planning (and Thank You, Jesus!), Judah is actually looking forward to going to Childrens today, because he is having his annual bone age done before anything else today. Just a simple x-ray of his hand. But he loves it because he knows exactly what it is, he's good at it, and they send him home with a printout of the x-ray. He's kind of a big deal;)
For those of you that don't know what today is about, here's a brief overview:
Tests last month showed evidence of an obstruction in Judah's ureter which is beginning to affect the health of his good kidney. Today, he'll go under general and they will send a scope in there to hopefully see the obstruction. Our prayer is that it will be obvious so that Judah can have surgery to remove it and then we can move on and get back to normal kidney health maintenance. If they are unable to see an obstruction because the scope can't reach the entire ureter, then we move on to plan B. Which I will detail at a later time if I need to. For now, we focus on the scope and what it shows today.
I appreciate so much all of you praying for PEACE for Judah today, and the ability to REST IN JESUS, knowing that he is NOT ALONE and he doesn't have to be afraid. Please pray that the Lord would give us words for Judah when he is anxious and wisdom to know how best to comfort him when he is waking up sad and scared. And please pray for wisdom for us moving forward, as well as peace in our own hearts today, and trust. God has been showing me recently that I have some deeply rooted trust issues. They tend to seep into areas of my life unexpectedly. Just when I think I'm doing OK, a lack of trust, aka fear, will rear it's ugly head.
I will keep you all posted. Thanks everyone!
Friday, May 14, 2021
The results are in!
Well, one of my biggest prayers from the testing last week was that there would be conclusive results so we would know what we're dealing with. We got a little bit of a mixed bag of results, but there was 1 for sure finding: there is a blockage of some kind.
The next step is a scope in June. Thankfully he'll be under general anesthesia for that. What happens immediately after that depends on what they do or do not see on that scope. A repair surgery is possible, but there are also a couple other options on the table. We just won't know for sure until they're in there.
Big picture: Judah's left kidney currently functions at 23%, with the duplicated right side functioning at the remaining 77%. The blockage is effecting his right side, and could ultimately impact its ability to function as well as it is. So, the priority is to do whatever we can to protect that right side so it can remain as healthy as possible.
As you pray for upcoming "nexts", keep this big picture in mind, and pray for wisdom and discernment for Jared and I as we make decisions. Also, pray that the dr. will see a clear obstruction with the scope on the 14th. This would change what happens next and actually simplify things for Judah. That being said, you can also pray that God would simply have His way, and that we would trust Him to walk with us regardless of the scope findings.
Thank you all so much for praying with us for Judah, and for praying for us! I believe that your prayers for Jared and I last week had so much to do with our ability to remain calm and experience peace. And that, of course, translated directly to Jude.
My natural reaction is to want to run in the opposite direction and protect Judah from anything and everything that will hurt. But God is faithful to remind me that it's in the midst of what hurts that we experience moments of deepest imtimacy with Him. And those are the moments that I crave. It's an uncomfortable tension to live with, this desire to run but to also experience more of Jesus. The challenge is to lean into what is hard and just trust Jesus. So, here we go, pressing on to the "nexts"!