Just when I begin to exhale, and things feel as though we’ve leveled into some kind of normal…we have one of our scariest days so far. Before I go into what happened, I will say that Ronan is currently stable and back to being Ronan ♥️

Yesterday evening, I woke up from a pre-work nap and Bryce told me that Ronan was in his room cooling off from a fight with Jack. I started a cup of coffee on the keurig and went to check on him. Bryce said he was only in there a couple of minutes. He actually thought the boys’ argument had woken me up. 

When I went in, Ronan was sitting on the floor, but was kind of hunched over forward. He didn’t respond when I first started talking to him. At first I thought he was still mad and was ignoring me or messing with me. But I got louder and more scared and he still didn’t respond. I got down in his face and lifted him more upright to see his face. He was awake but completely blank, not responding.

I began trying very hard to get him to respond to me, yelling, tapping his cheeks. I yelled something to Bryce, terrified. Bryce immediately called 911. I was anything but calm but I could see that he was breathing, had decent color and had a good heart rate. I just kept trying to get him to respond to me. Maybe because this came out of nowhere or because there are so many potential causes going through what he is, but having him not see me, not respond to me? It was the scariest feeling in the world. 

Bryce put 911 on speaker phone and we answered their questions. Ronan went from blank and staring to twitching and blinking. Some part of me was logical enough to grab my phone and record some of what was very obviously a seizure.  We begin fumbling for his glucometer trying to check a blood sugar in case that was the problem. Mecaptopurine can sometimes cause low blood sugars though it is more common in younger kids and in the morning after sleeping. 

EMS arrived very quickly which I am so thankful for, and we help them check his blood sugar, which is fine. We quickly talked them through everything that had happened and his history. Bryce called the on-call oncologist while I rode up with Ronan. 

In the ambulance, they started an IV and also ended up giving him some versed, as they were concerned he was having an absent seizure. Kids don’t always have seizures that look as dramatic as seizures look on TV. Very often, they are just staring, having weird eye movements, twitching a little, etc. I am still not sure if Ronan was actively having a seizure when I found him and it just changed…or if he was post-ictal from a seizure he had before I got in there, and then had a second seizure in front of us. The after seizure state or post-ictal state can look a lot like an absent seizure. I have lots of questions for neurology today.

In Salem, they did a whole bunch of labs, a chest X-ray, and a CT. The CT was a little scary because Ronan started vomiting and I’m so thankful I was in there with him to immediately sit him up.  The CT ruled out a scary brain bleed or a stroke and that was a huge relief…Chest x-ray ruled out pneumonia. Labs showed he was not neutropenic, and electrolytes were all pretty normal. Kidneys were functioning well. The only wonky lab was his white count being elevated but apparently that can happen after a seizure. All other infection labs were normal and with him not being neutropenic, infection was a less likely cause.

Doctors were reassured by all  of those findings. They gave him Kepra (an anti-seizure med) to prevent further seizures. The plan was to transfer us north and get a sedated MRI today to really rule out scary things. It sounds like the IT methotrexate he has been getting weekly for two weeks now is their most suspicious culprit at this point, but the MRI will offer more of a rule out on scarier options. 

It took Ronan over an hour to come around enough to respond to me or Bryce asking him a question, and I have never been so relieved in my life. I swear that every worst case scenario can’t help but go through your head and seeing him unresponsive for so long was so freaking hard. 

After that, he woke up a few times briefly with things like his port access to getting settled into the second ambulance. He fully woke up right when we got to the floor up here and the doctor was able to get a good neuro exam. He was also wide awake and chatty around 0400 in the morning, but then had a headache and felt a little nauseous and went back to sleep. 

He is supposed to be getting an MRI in 15 minutes, though I am sure it will be late as nobody is here yet. Hopefully we will have some answers by this afternoon. Until then, we wait. Ronan is currently building a sail boat out of a crayon box, thermometer covers, tissue, and tape, so he is feeling okay after another headache this morning. 

Thank you to work friends for checking on us. Thank you to good friends for helping with Jack, keeping me company, bringing the all important Hooey up to us, and bringing me food and coffee. Thank you to Grammy and grandpa for coming up quickly to relieve friends and keep Brycer company. The whole thing was pretty scary for all of us! 

Please keep our Ronan bug in your thoughts and prayers. We still have such a long way to go and it has been such a crazy ride already! ♥️ 

*Picture from a paddle boat ride Ronan took with Brycer last week on a good day*

***Update: MRI was clear! No signs of injury and no visible cause for seizures. This doesn’t answer all the questions but it rules out the worst case scenarios. Very, very good news!***