What a weekend we’ve had. I’ll start with the ending, so that you don’t have to ride the roller coaster that we did for the last few days: Ruger is totally heart-healthy, and does NOT have any rare diseases.

I’ve lost track of the exact timing of everything, but for the past 2 weeks, our 3 youngest kiddos have been dealing with some kind of respiratory virus. Davis got over it pretty quickly, and mostly just had a runny nose. Sunley almost had to go to the hospital for low saturations and difficulty breathing, but she came through it without hospital support. Ruger has had a very hard time.

His symptoms started about 11-12 days ago with a really bad cough and a high fever. I took him and Sunley to the pediatrician about 10 days ago, and by the time we got there, his breathing was extremely labored – the worst I’ve seen. They almost sent us straight to the hospital, but with a breathing treatment in clinic, he was starting to show improvement -- so we got a COVID/Flu/RSV swab (negative) and a chest Xray and then were sent home with an antibiotic and instructions to use our albuterol inhaler as needed. He was also diagnosed officially with asthma (since he has struggled with respiratory viruses and severe allergies in the past). This was all on a Thursday. On Saturday, his breathing was ok but overall he had gotten much worse and his fever was 105.6, so I took him to the ER. We redid the Xray and it looked a little worse but still not too bad, so we went home. Monday, we followed up with our pediatrician and talked about his asthma specifically. The doctor looked at his ER Xray and noted some very mild pneumonia in his upper left lobe, but Ruger sounded better. We talked about the pros and cons of medication for asthma, and left with a prescription for a daily inhaler.

By this past Friday, Ruger was on the next-to-last day of his antibiotic and still had not improved at all. He would go a bit without a fever to the point that we thought he was turning a corner, but then it would come back with a vengeance, usually anywhere from 103.8 to the 105’s. I called the pediatrician, and she immediately squeezed us in. I’m so glad I made that call!

I took him in thinking we would be told to finish the antibiotic and come back Monday, but instead several doctors came in the room and started talking about Kawasaki disease. I had every feeling I had when doctors came in the ultrasound room in 2017 and starting talking about birth defects. Like I’ve been shoved on a really fast-moving train and no one is letting me off.

It was all so bizarre and Kawasaki is so rare, that I was sure this wasn’t what was happening (maybe that was just denial). But I definitely agreed that something weird was going on, and I was happy they were taking my concerns seriously. We ran bloodwork, gave Ruger an antibiotic shot, and the pediatrician recommended getting an echo to check for coronary dilation(which would be caused by Kawasaki) and for things like myocarditis. She called me just a couple hours later and I could hear the concern in her voice when she told me that his bloodwork numbers were pretty alarming, including a white blood cell count of 42 (normal range is I think 5-14.5). Since Kawasaki is linked to cardiac damage, and since it’s partially a judgement call and very rare diagnosis, and since it really requires early intervention to prevent the cardiac damage, we opted to go to TCH in Houston. We know the team and know how to navigate things there. But also, OU Children’s was totally full and sending patients elsewhere.

We started putting things in motion to leave for Houston quickly. I called Sunley’s cardiologist, and got through to her on the first try (thank you Lord), and she agreed with the pediatrician. Once I understood that we needed to see cardiology I was so comforted, just because I know the team there so well. I went by the pediatrician’s office to pick up printed copies of his lab results, and on my way home of course the van broke down. Deep breath, a phone call later, and Derek came and jump started the car which got us home. We’ll deal with getting a new battery for the van this week sometime.

Derek’s parents dropped everything to come stay with the kids at our house. Yet again, we had to tell our kids that we were leaving and didn’t know how long we would be gone. It took a LOT of reassuring. I promised Hadelyn that if we got there and the doctors told us that we’d be there a long time, that I would send Daddy back to bring them to Houston. I left her with my robe to wear, and filled up their stuffies with mom hugs. It was really hard to leave. Sunley had an especially hard time with it, because she’s usually with Mom and Dad when this happens. She gave Ruger lots of advice about the hospital, and in her extremely dramatic voice and a hand on her hip told him, “Well Ruger, you don’t need surgery buuuuut….you’ll probably get noodles!” Noodles is her word for chest tubes. I told him that no, we will probably not be getting noodles. I heard Davis waking up from her nap just as we were leaving, and selfishly we really wanted to give her hugs, but we knew it would make it much harder for her. So we just left. Again, it was really hard to leave. From the time the pediatrician called until the time we left was probably only 2 hours.

Ruger REALLY hates shots. When he got his antibiotic shot Friday morning before the blood draw, even after practicing while waiting for the nurse, he screamed and thrashed and told the nurse she was an idiot. It’s ok to laugh. He immediately apologized once the shot was over. Just a few minutes later, he had to do a blood draw. I promised him a new pack of Pokemon cards if he didn’t throw a fit. “Crying is ok, but you can’t be disrespectful,” is what I said over and over. We counted how many deep breaths it took for the blood draw to be over, and that helped a lot. It was 47.

All that to say, the whole way to Houston, he was asking us questions about what was going to happen at the hospital, and it was really difficult, because I honestly had no idea. I knew there would be at least one shot (the IV) but I didn’t know anything else. My dad set up all the arrangements for us to get to Houston quickly, as he’s done time and time again, and we got to the ER by 7 pm. It was packed. I’m still praying we didn’t pick up any new viruses while we were there. The nurses were working their butts off, so I knew it would be a while before Ruger could be seen, but it wasn’t nearly as bad as I thought it would be – looking back, probably because they thought he possibly had cancer.

We showed the triage nurse his paperwork with his WBC, and it was obvious that everyone was taking this very seriously. Back story is needed for the next part:

Derek has a hereditary and very minor blood condition called spherocytosis. It is VERY rare, and doesn’t usually cause life threatening problems. We actually don’t know a lot about it, but we know that it can throw WBC off. I have no idea still if it could be what caused Ruger’s weird blood numbers, because it was more than just the WBC that was off, and we don’t even know yet if Ruger has spherocytosis. BUT Derek’s grandpa was once tested for cancer due to the spherocytosis giving him cancer-like numbers. Because of all of this, we mentioned that to the resident initially handling our ER case. He breathed a sigh of relief, and said “I’m glad you mentioned that because that’s the first thing we think when we see these numbers.” The testing for spherocytosis requires more than a blood draw, AND remember we don’t know if spherocytosis can cause all the other weird blood numbers, so they continued screening him for initial leukemia signs. No one ever said the word cancer or leukemia (except us), but we knew that was what he was being screened for, and he had every symptom except for bleeding/bruising. They were also still screening for Kawasaki, but he didn’t show as many signs of that. The plan going into admission was to start IV IG treatment for Kawasaki while we waited on the echo results, while continuing to screen for leukemia via bloodwork.

We didn’t mention the possible cancer to anyone, because we REALLY didn’t think it was happening and so we didn’t want to alarm anyone. Well it turns out, EVERYONE was worried about it anyway, so I accomplished nothing by leaving it out! None of us wanted to say it out loud. As soon as things started moving, and I saw that the whole team was actually considering these rare and horrible things as a possibility, I could feel the numbing, very thick walls go up in my spirit. I went into my role of just trying to make the hospital fun. I will also say, I didn’t have to advocate for Ruger AT ALL. Any hospital mom will tell you that advocating for your kid to get all the tests they need when they need them is part of this life – that’s just how it goes every once in a while, not every time. It was so wonderful that they were 1000% covering all the bases with Ruger. The communication the whole time was so thorough, and we left today (Sunday) feeling completely comfortable.

Coincidentally, perfectly, I had worn a tshirt from my sister that day that had a verse from Daniel on it: “And if not, He is still good.” I had no bandwith to process what was happening, or even to really pray, so I just kept calling to Him in my head, silently repeating, “God of Daniel.” That phrase was as far as I could get into asking Him to take care of my boy. I pictured angels filling in all the gaps in the crowded ER and those things brought me enough peace to just be still and wait.

We redid his bloodwork around 11:30 Friday night in the ER. Inexplicably, ALL of his bloodwork had leveled out. While we still needed an explanation for the fevers and the length of the virus, etc, that was a huge relief to everyone. No one is sure why his numbers jumped out of whack and right back again, but it’s likely that the numbers got better from the antibiotic shot that he received from the pediatrician Friday morning. Thank goodness everyone was on top of this little boy’s care from start to finish. Ruger received another round of IV antibiotics in the ER plus a chest Xray. We got to our room in the CPCU around 2am. We were in one of Sunley’s old rooms actually, and around the corner from the room where she did most of her Fontan recovery this past April. Those memories flooded back HARD, and while they are both happy and sad, it is really hard to carry those sometimes. Every time I looked around I saw things.

I left the room to get some water, and ran into one of Sunley’s night nurses, Claire. Of course, everyone’s first reaction when they see us is some version of What’s wrong with Sunley?! And is followed by a brief explanation of how crazy this is for us to be back without her. Claire gave me a much needed hug, and seeing a familiar face was so comforting.

We all got a good couple hours of sleep, and Saturday morning we ran tests, talked to cardiology, talked to Infectious Disease, etc. Ruger got a COVID swab, which was still negative. Everything is honestly such a blur. We didn’t see many familiar faces this time, just because it was a Saturday and the hospital is (typically) pretty sparse and slow paced on those days, cafes and crowds included. Ruger looked so rough. He was a little jaundice and just so weak and tired. But no fever. Moving in the right direction! He got an echo, but honestly at this point everything was being done out of an abundance of caution, because he was trending in the right direction.

Honestly, I’m sitting here trying to remember more details from Saturday, but it’s all just blurry. We went to bed at a reasonable time, and joked about how ironic it was that we got an extra hour in the hospital because of the time change. I was feeling nervous that his fever would return but his last fever was early Friday evening in the ER and it was only 100. In fact, by Saturday afternoon, he was receiving no medications or therapies or anything! It was so strange to have so little happening, when we’re used to so much more.

This morning (Sunday) I was so so happy to wake up to a smiling, fever-free, barely coughing Ruger! His color was way better, too, and his eyes weren’t sunken at all. They ran bloodwork to make sure nothing had come back up, and THANK YOU LORD it was all normal. We never did find a for sure answer on what caused such a severe battle with whatever he was fighting. Infectious Disease believes he just had multiple viruses at once. His PCR 20 test from Friday in OK showed him positive for rhinovirus (common cold), and while that can cause long fevers, they still suspect there were more viruses at play.

But the phrase I used a few times was, “I’ll take no answers for no cancers!” While we don’t necessarily have a solid answer, he is better and he has been thoroughly checked for anything dangerous. Even though it ended up being so chill, the doctors told us it was good that we brought him in – any kid with the symptoms he’d had would need some hospital support. I’m glad everything worked out the way it did, and I’m especially glad he got the antibiotics his body needed.

Sometimes, God answers prayers immediately and exactly the way we want it to, and that was actually our story this time – I am grateful. We know firsthand that things don’t always work out that way. Sometimes we get the God that shuts the mouths of lions and immediately brings us out of the pit…and sometimes he sends a whale, and we sit inside for what feels like forever going WHY DID YOU LET A FISH EAT ME. Sometimes the saving comes immediately, and sometimes it doesn’t come until life pukes us into heaven. Not my most eloquent writing, but my point is that God is present in both.

Sunday (today), after every test came back normal, we were sent home with a healthy boy who just has an infrequent and minor cough. Praise God. We drove straight from the hospital to the airport and booked the next flight out to OKC. We just got home and had a delicious dinner in our fridge from a friend at church. And this entire weekend, guys…we have been COVERED in prayer. I am weary of always being the family that needs prayer, but yet so so grateful for it.

There is more I’d like to say, but as you can imagine I am EMPTIED. I’m sure I’ll have more to post and more to process in the coming days and weeks. I have a lot of heavy, confusing, happy, frustrated feelings. But I could write books and books on how God has shown up in our lives – and I would have boldly followed him into the world of pediatric cancer if He had asked me to. But tonight I’m celebrating that He has simply called me back home to my children.