Double Update!

 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."

The official diagnosis was Hyponatremia due to Syndrome of Inappropriate Antidiuretic Hormone Secretion. Yeah. That is a ton of syllables to say he had low sodium because his body was holding onto too much water. Electrolyte issues can get dangerous for Judah quickly, so it was good that I took him in. Had I waited much longer he would have gone into adrenal crisis. We don't know what actually caused his body to hold onto that water, but it was easy to fix, so thank You, Jesus! 

Moving on...

As Judah told Grandma this morning - "Today's the day!" Translation: NO MORE KING GEORGE!

We had a busy morning at Children's that started in the lab. Not fun. Moving right along. To cope with the trauma of the lab, sometimes Judah talks nonstop to whomever we see next. Today's lucky lady was the ultrasound tech. He regaled her with tales of his adventure in the ER and hospital. He told her that he was like Jairus's daughter (the one who couldn't wake up in the Bible). Of course he was more than happy to elaborate. He talked about hospital food being better than any other food, even from home, to which I heartily disagreed, because I am a good cook thank you very much. He told her about his nurse waking him up the morning and not having a very good sleep (False. He slept through ALL vitals!). He talked on and on and on while she listened attentively and did a great job of hiding her giggles. 

All done, ready to move on to the Urologist. 1st things 1st: saying goodbye to dear King George III.

We were pretty excited about that. We said goodbye in 5 languages. We will not miss King George. The renal ultrasound showed no change in the hydronephrosis of his right kidney! Which means having a catheter did nothing for him - good news! So, the bottom line is that, when looking at all of the imaging and tests from May and the scope and catheter from this month, they have determined that Judah has a new baseline of kidney function - a new normal - brought on by the normal progression of his kidney disease. Which is great news! There's nothing that needs to be done! AND surprise, surprise Judah totally GRADUATED from the Urology clinic today!!! Of course he thought we should throw him a grad party with all the food and music and PARTY! I suggested maybe a date with grandma and grandpa this afternoon instead, and he said "EVEN BETTER!" He tacked on a family pool party to the graduation festivities, so July 5th, look out! We are going to celebrate! 

The end result of all of this could not have been better. On top of that, I never even considered praying that God would move him on from Urology. I know that they could come back into the picture at some point, but he's been a frequent flyer of that clinic for 12 years! It just never occurred to me that God was going to do something so much bigger than I was asking for! You guys, we're down to 4 clinics. Just FOUR clinics! God is awesome and His care for Judah is far greater than I can imagine or even think to ask for. 

We can now put this behind us and move forward in maintenance mode. Again. And then pretty soon it will be time to tackle the next thing. But God is already waiting for us there. 

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. 

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!

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. 

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!

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"! 

From the Living Room

Praise. The. LORD! Holy cow, what a totally different experience from 4 years ago! You guys, I am giddy excited about how this morning went! 

No problems with the anesthesia, 1st test, or what needed to be inserted for the 2nd. Actually, Judah's Australian anesthesiologist had quite a lovely exchange with him about all things Australia. And are we surprised? Ah, no. 

He had a hard time waking up, but nothing out of the ordinary for him. It's always hard to see him be sad and uncomfortable, but snuggles from Mom usually do the trick.

Once we moved to the next room amd transitioned to the table, Judah calmed down quickly. I'm so thankful that he had residual sleepiness - that really helped! He held my hand the whole time, but he was relaxed and held still on the table for just over an hour! The docs got almost everything they wanted to get today - a HUGE win! His Child Life Specialist was amazing! She played country music from her iPad and engaged Judah in conversation right away. Ezra's sports, country music, and cowboy boots. Eli's college and visiting him. Puppies, therapy dogs, NICU babies, K-LOVE, Chic-Fil-A, Charlie & Ollie, chickens, living on a farm, Cat in the Hat, chocolate chip cookies, wanting to be a doctor, and Mickey Mouse Clubhouse are the topics I can remember. Haha! I LOVE listening to Judah talk to people! When we were completely done, off the table, stickers off, ready to go, she surprised Judah with a Chic-Fil-A giftcard and thanked him for doing such great work today. That was the best! We left the building with smiles all around!

We are very happy to be home with Charlie and Mickey Mouse Clubhouse. We'll know something in a couple days. And then we'll see what's next. 

Again, THANK YOU for praying today! You guys are a gift to us!

From the Waiting Room

 I have written so many posts from this room. Some weightier than others. Thank You, Jesus that today's wait is not a long, heavy one.

As usual, the Children's staff killed it. They are so kind and compassionate, so careful with Judah, knowing how anxious he is. Everyone's ducks are in a row, and he's currently getting his anesthesia and 1st round of testing. He was either on my lap or holding my hand since arriving at 6 this morning, and he cried when it was time to let go and move to another bed to go back. That was hard. I got super close, looked into his eyes, and reminded him that when Mom and Dad can't be there Jesus is with him, holding him all the time. Jared prayed with him, kisses, and that was that. 

We've done anesthesia over 20 times, and that goodbye never gets easier. But trusting the One Who Sees has, so at least it's gotten easier to get past the goodbye and wait. 

I'll keep everyone posted. I don't anticipate any hiccups with this part of the morning. The difficult part could come when it's time for his 2nd test and he has to be awake. 

Please pray that the Lord would flood Judah with warmth and peace, and a sense of His presence, so that Judah will remain calm and relaxed on the table for all of the imaging. Pray that anxiety won't take hold, so that his body can function during imaging, and the docs can see what they need to. 

I have to say, I am overwhelmed by the amount of texts and messages Jared and I have gotten this morning! I realize that in the grand scheme of things, our time at Children's this morning is not a huge deal. We've experienced much bigger deal, scarier days. But the fact that so many of you are willing to carry our burdens for Judah with us, pray for him and for us, feel the weight of our concern for him and his anxiety - all of it. Guys, thank you! Thank you, Family. Thank you, Friends. Thank you, Church. Thank you, Miss Leamon's class all the way in Hungary! I'm humbled, again, to experience this community and the power of prayer! 

Love you guys! 

Here we go again...

 In the last 4 years or so I have said no to a lot of medical things for Judah. Primarily the more invasive tests/procedures, but also major ortho/dental work and things like that. Judah deals with a lot of medical trauma and anxiety, and he needed an extended period of time with only easy and positive experiences. Lots of successes. Minus the lab, of course, but he did have a major victory there last month so can I get a HALLELUJAH! 

In the last 18 months his kidney function has declined, and because of his kidney disease and poor health in that entire area of his body, we need to do something about it. On May 11 Judah will undergo 2 tests/1 procedure, 1 of which will happen in the OR so he can be asleep for it. Because his mama wasn't having it any other way on this one. And the other one will happen upstairs in Urology after he's awake. Without going into detail about what these urology tests entail, I will say that they are invasive, uncomfortable, and the times he's had these in years past have been largely unsuccessful and traumatic. For both of us quite honestly. However, it appears that either Judah's kidney reflux is back, or there is an obstruction. We've gotta know what's happening in there so it can be addressed and his chronic kidney disease can be maintained at a Stage 2. 

I would be lying if I said I felt totally fine with this and confident that everything was going to go well. Thanks to my time with Fresh Start a year and a half ago, I'm able to recognize the anxiety I'm feeling that's rooted in past trauma. I can call it out for what it is, and lean into Jesus and deal with it. It's really hard, and those old feelings of fear are very real. 

We haven't told Judah yet about his upcoming appointment.. We've learned that he does better when he doesn't have a lot of time to dwell on something. But it also helps when we have time to talk through something a few times before it happends. So there's a sweet spot there of not too soon but not too late.

I'm praying for Judah's heart. I'm asking the Lord to prepare his heart for what's coming, but also to give him peace and a very real assurance that Jesus is with him, and it will be ok. I'm praying that he will be calm, and that he won't experience the normal amount of fear and anxiety. I'm also praying that these 2 tests will go as quickly and smoothly as possible, and that they will be successful, giving the doctors the information they need. 

And, of course, I'm spending time with Jesus for my own self. I don't want even the tiniest bit of my own anxiety to be communicated in any way to Judah, so I'm trusting God to walk me through dealing with that, and I'm trusting Him to completely take the anxiety and fear on that day and replace it with peace and confidence in God's care for Judah. 

I'm reminding myself that regardless of how this visit goes, even if the worst happens, that doesn't mean that God abandoned him. Or me. It wouldn't make God any less good or kind. He is exactly who He says He is - Judah's Provider, Rescuer, Comforter, Great Physician, Redeemer, and Abba. I know that He's mine, too.

Will you pray with me in preparation for this day? For any or all of these things I've mentioned? I am so thankful for a community of people, near and far, who love and support us so well. Thank you!