This is kind of a longer story with some confusing details, but the God story at the end is worth the read. He always does stuff like this. Why am I continually surprised?!

I’m not sure how it has only been a week since we rushed a barely-conscious Sunley to the ER by our house. It seems like so much has happened — way too much for only seven days. It was a very short hospital admission covered in confusion and sleepless eyes. But it was also covered in grace and protection.

He always provides.

Last Monday, Sunley was having a “low day.” This isn’t uncommon, and we know what to do. She typically experiences these spells of very low energy, sometimes accompanied by chronic pain in her legs and head. This day, she woke up with a headache, a stomach ache, and very low energy. We decided to keep our normal routine: Piano lessons, lunch out, speech therapy,(all outings that don’t require much exertion), and then rest at home in the afternoon. At lunch, Sunley began to look pretty cyanotic (blue around the lips, hands, and feet), so I checked her oxygen saturations, and they were around 91, but dipping into the 80s. We cut lunch short and walked next door, back to the piano academy to lie down on the couch and see if that helped. Usually, just getting horizontal for a couple minutes does the trick. She was still pretty puny afterwards, but was no longer cyanotic, and her sats were around 94, so we headed to speech therapy. I texted her therapist and said, “Sunley is having a low day, so feel free to cut it short if it’s not going well.” I didn’t want Sunley to hear me say that, and subsequently turn on the drama to skip out and go home!

I was very glad for that 30 minutes she was out of my sight, because when she came out of speech therapy, it was very obvious to me that she needed medical support. If I’d been watching her that whole time, it may have been too gradual to see, but because I didn’t see her for 30 minutes, the rapid decline was easy to spot.

When she came out of her speech therapy session, Sunley was so pale, almost grey, and her lips, fingers, and toes were dark purple. All of her skin was totally mottled, and she didn’t speak at all in the car ride home. My portable pulse ox wasn’t even picking up her levels, so I knew she was very low. I called Derek to let him know that we were absolutely going to end up going to the hospital, and he rushed home. I got her and the other kids home, laid Sunley on the couch hooked up to the better pulse ox machine, and went upstairs to pack a go bag. Apparently, I’m very out of practice now, because I forgot SO many things! I was very sad to leave the beautiful outside weather and head for the hospital. Sunshine is for hammocks; not hospitals.

When I came down, Sunley was shivering and looked awful, wasn’t speaking, and was saturating around 85. Derek arrived home and got Sunley to the car while I told the other kids goodbye. Because she looked so awful, we opted to go to the nearby ER at Mercy to get oxygen and evaluate there instead of calling an ambulance or driving all the way to OU Children’s. We should have gone the ambulance route, but whatever. Live and learn. I texted 2 friends who we’d seen that day that we were headed to the hospital, and then immediately realized that I had zero capacity to update anyone else, and asked Derek to text people. Within 2 minutes, my phone was blowing up with prayers and offers to help. That was the best, and not overwhelming, because I knew that no one needed a text back. I didn’t update hardly anyone, but I read every text and felt so much support. Thank you all for that, and always send the text. You may not get a response, but it is always appreciated!!

Always grateful for our community of prayer soldiers.

The pokes and stickers and coaching began quickly. We’ve got a pretty good routine with IV insertion and blood draws: Sunley wraps her body around me, makes her arm like a noodle, and we count how many deep breaths it takes until the nurse is done. Unfortunately, after the blood draw, the IV went bad, and they had to do it again on the other arm. There was less coaching and deep breathing, and more holding down the second time. Sunley is a FIGHTER, and I’m glad for it. It will serve her well. But it breaks my heart, too.

I got her settled at the ER while Derek was nearby with the kids at home. We started running tests and did an Xray. Unfortunately, the Xray showed significant cloudiness in her lungs, and they diagnosed her with pneumonia. This was shocking, because she hadn’t had any symptoms besides this very typical low day. But pneumonia definitely meant an admit to OU children’s, so Derek called our neighbor to come sit with the kids. He repacked my bag with all the things I forgot and came up to the ER. This was the point when I remembered I had eaten literally nothing all day. Ironically, I had decided to fast that morning. More ironically, all I had in my purse was the leftover communion bread from the day before (I was in charge of making the bread that week and always make extra for snacks). I’d like to say that the fasting gave me extra strength that day, or that I was “super plugged in” to the Lord because of the fasting, but honestly? I was dizzy and hungry and grumpy, and literally felt like my brain wasn’t working at all from the combo of hunger and adrenaline. I thought that whole situation was pretty funny.

My brain seriously was not functioning at full capacity, because there were SEVERAL people I could have asked to bring me food, and it didn’t even occur to me. I was truly tunnel-vision focused on figuring out what we were going to do next. Sunley’s piano teacher stopped by the ER while we were there, ready to just pray in the parking lot, but we were able to sneak him in for a visit, which lifted everyone’s spirits a bit in the waiting, while we were figuring out what was going on.

Derek and I discussed getting her to Houston, but clinically she was already starting to improve, and we REALLY didn’t want to make the Houston call and leave our other kids unless it was necessary. We opted to ambulance from Mercy to OU, hoping it would expedite the process of admittance there. We waited for about 3 hours on the ambulance, and they periodically told us it would be another 30 minutes, another 30 minutes, until finally at 7 pm they called to tell us they would not be coming.

Sunley was SO disappointed. The only thing she was okay with was riding in the ambulance. As we wheeled her to the exit, I told her, “Sunley, every time we get disappointed in the hospital, God sends something or someone to surprise us. So your job is to look out for something that brings you joy and tell me when you find it! My job is to tell the doctors what you need. The doctors’ job is to get you home.”

He has trained our eyes. I knew He would send something.

We left Mercy with a folder full of her tests from there, and made a phone call to the ER to let them know we were bringing in a single ventricle cardiac patient with pneumonia. We went through the drive thru next door to the ER to grab Sunley and me a burger, and I have never inhaled food that quickly…well at least not since the last ER visit. When we arrived to the OU ER, I reiterated all the things: We’ve called ahead, we’ve already been in an ER for 4 hours, she is single ventricle, she needs a cardiology consult, etc. We went back after only about 45 minutes of waiting (which is more than we’ve every waited before, but understandable since she already looked so much better), and then….then we waited 8.5 hours.

I won’t go through the grueling minute by minute series of events. Basically, no one could agree on what was wrong with Sunley. She had no symptoms anymore, except low-but-not-too-low saturations of 91-92, high WBC, and cloudy Xray. But the ER doctor did not agree with the pneumonia diagnosis and wanted to run more tests.

Looking back, I should have made a BIG deal about it all and insisted on a room while they figured it out. I think part of me was wanting to go home, like Sunley. Without a pneumonia diagnosis, we all agreed that she could go home and we could monitor there. (Looking back, this was not the right decision— she needed to see a cardiologist — but I’m not kidding when I say that my brain was not working right!) We decided to run a few more tests to look for anything scary. We ran a PCR 20 and did another blood test to check her BNP, and decided that if those came back clear we would go home instead of being admitted. Unfortunately, the BNP takes a couple hours. Derek stayed as late as he could, then went home to relieve the babysitter. We fully expected the BNP to be fine, so Derek’s plan was to relieve the babysitter, and then wake the kids up in a few hours when we got discharged. He also took the overnight bag home. Did I mention it was FREEZING in the ER? Why did I not at least go get a blanket from the car?

Like I said, ROOKIE mistakes! We are out of practice.

Her BNP unfortunately did not come back in normal range, so they admitted her and assigned her a room. And then we waited SIX MORE HOURS for the room to be cleaned. I will skip the part where I record my feelings about this wait in written form. Everyone was trying their best. Sunley slept. I prayed. I didn’t have my overnight bag (what were we thinking), so I had no books, no toothbrush, no blanket. I sat and stared, and when I got angry I told the Lord all about it.

Remember how He sends us moments of joy?

There was this custodian in the ER who noticed me sitting there for so long, and without even asking, she brought me a warmed blanket. It reminded me of all the people we have encountered who do that one extra thing, above and beyond, and it stays with you forever. One such person was Dr. Lahiri, or SJ as we all called him — the first cardiology fellow on Sunley’s service the day she was born. He was so incredibly patient with us, and explained her diagnosis again and again. He took the time to explain to us not just what they were doing, but WHY. He helped us feel confident when we shockingly got to take her home to our Houston apartment at one week old instead of sending her to surgery at one week old. Throughout our first year in and out of the hospital in Houston, SJ would check in on us, even when Sunley was not on his service. The first time we took her to the ER as a baby, SJ passed us on his way out (he had just gotten off duty), and stayed past his shift for 3 extra hours just to make sure we were settled and felt safe. Then, at some point after her second surgery, he just disappeared. He had transferred to a different hospital and we never saw him again. I’ve actually googled his name a few times, but there are many Dr. Lahiri’s, and I could never find out where he had gone. Still, I never will forget him. And I’ll never forget the custodian with the blanket at the OU ER.

Well, we finally made it to our assigned room at 5am on Tuesday morning. I had taken her to the first ER around 3pm Monday, and within an hour we knew she needed to be admitted. And yet, we didn’t get that room until 5am the next day. The medical world is crazy, and few doctors know what to do with single ventricle heart kids — that’s all I’ll say about that.

Remember how He sends us moments of joy?

One of Sunley’s favorite people is her old babysitter, Livy. And guess who is now a nurse tech and just happened to be on duty when we were admitted? Livy walked in just after we got to our room and Sunley LOVED it. We had a short and very sweet visit (I miss Livy too!), and then I got about 30 minutes of very heavy sleep. I set my alarm at 6:15 to wake up and order Sunley and me some breakfast. In no time, it was beautiful and sunny outside so we raised all the window shades and had a hospital bed dance party. Daddy and the kids showed up a couple hours later to say hi, along with my friend Ashlynn.

Remember how He sends us moments of joy?

The pediatrician on our service came by to run down the plan for the day: Rounds, echo, bloodwork, and if everything looked safe:HOME. I was great with this plan as long as the echo was good. Then she told me the name of the cardiologist on duty: Dr. Lahiri.

“Aw, that’s the same name as one of our favorite doctors from a long time ago!”

I knew it wouldn’t be the same man, but even just having the same last name was a sweet little moment of comfort from the Lord.

But guys…

It WAS him.

Jesus loves me. He sees me. He comforts me in ways no one else can.

Dr. Lahiri has only been at OU for a few months, and the fact that we just happened to be placed on his service is pretty amazing. Dr. Lahiri doesn’t go by SJ anymore. Everyone was calling him “Sir.” Weird. Derek and I loved seeing him in this new role, and no one can tell me the Lord did not do this for us. A man who we already trust more than anyone else in that building was in charge of Sunley’s cardiac care. It would take a lot more faith to call this a coincidence than to call it a comforting act from the Lord’s hand. I got to show Dr. Lahiri the pictures I still have on my phone of him during Sunley’s first few days, and we got to take a fresh pic of the two of them together. It was such a cool moment, and I will never forget how the Lord holds me in hospitals.

You can find stories just like this throughout this whole blog. He has done really sweet, crazy things to go above and beyond, just to make sure I know He sees me.

Ashlynn was able to stay with me when Derek left to take the other kids to school, and she got to see “behind the curtain” a little bit, and share in that world, which was pretty special. Sunley’s echo looked great, and by 2pm we were discharged. Her symptoms have been gone ever since, except for some low 90s sats, off and on. We have ordered oxygen to have here at home (still working on insurance etc for that, holy cow), but she seems to be completely over what had her looking so awful. She even played her first soccer game on Saturday morning. The week has been about hammocks; not hospitals.

Sunley’s teacher came by the house after we got home on Tuesday to drop off cards that her class made. She shared with us what she told the school in assembly that morning, concerning Sunley being in the hospital:

“The Nichols family chooses a name for God when they run out of words for their prayers. And Jehovah Rapha is one of the names they use. So today, if you are playing outside and want to speak to God, you can use the name Jehovah RAPHA.”

So, while we were in the hospital, there were a bunch of children running around outside whispering RAPHA on behalf of Sunley.

I like that very much. I can almost feel the ground shake when I think about that.

So, we don’t really know what happened. Either, she has a tiny virus that her body just freaked out about, OR she had pneumonia, and then because of your prayers (SO MANY PRAYERS), God moved it out of the way. I don’t know what happened. Here’s what I do know:

Sunley was very sick.

Sunley got better.

The Spirit of the Living God held my hand the whole time.