(Update transfer from Caringbridge)

We had gotten home and fallen deep asleep. Woken up by a toddler who felt GOOD. It seemed like the attack had lost its grip. By noon, when his neurologist checked in, he was almost back to baseline

Baseline is always the goal with Hemiplegic Migraine. Though it presents exactly like a stroke, a Hemiplegic Migraine typically resolves completely once the postdrome (the 4th phase) has completed. The loss of skills, speech, balance, muscle tone, etc all returns. Sometimes painfully, as muscles can contract and cramp after being slack for so long.

So we are always looking for that baseline.

To be out of an Intractable attack, you must be at your baseline for 24 hours.

This signals a full break and anything else would be considered a new attack.

I told the neuro nurse how well he was doing, that we were even out taking his garbage truck on a walk and close to baseline, just needing to hit that 24 hour mark from 11pm the night before, when things finally seemed to relax for him in the ED. We were SO exhausted, but relieved. We were so close and Braven was feeling so good.

Then about 4:30pm, Braven told me his head felt "not so good" and I noticed his face losing emotion again and getting glazed over. We did meds and bed and everyone fell asleep together in a floor campout.

About 4am, Braven rolled into my arms in a strange fetal position shaking uncontrollably and whimpering with an odd voice. After a few minutes I could tell this wasn't chills or a fever and something felt very wrong. I woke David and had him take over so I could grab our toddler pulse oximeter.

The new abortive med Braven was put on can cause changes in the heart and blood pressure so we have to monitor closely for that.

The pulse ox went crazy, warning he was in an emergent state with bradycardia (very slow heart rate) and low O2. We tested all the fingers and toes and our own, hoping it was a fluke and then called 911. About 2 minutes before they arrived, he stabilized and the monitor began reading him normally, and matching what the EMTs were getting.

However he was barely responsive and highly confused, garbled his speech and became tachycardic (high heart rate). That's when the high level trauma paramedics arrived. We knew each other instantly.

She transported us to our local ED where we unfortunately got the worst ER dr yet. The doctor completely disregarded the Paramedic's official Hand Off protocol and instructions to treat Braven as post seizure, and instead took his temp (101) and looked in his ear (infected from the steroids he is on) and said that it was just chills and rigor and they see kids sick with colds like this all the time.

David and I were livid and told him he needed to speak with Seattle Children's regarding Braven's care. He said he did and "they agreed that this whole week has been caused by Braven's cold and ear infection" (despite the fact that the minor cold didn't even start till the weekend.)

He gave us a Rx for amoxicillin and discharged us, saying Braven "was not confused he was just tired" in his notes, even though Braven was still so confused and lethargic he couldn't name our dogs, or sit up or walk on his own even several hours past breakfastime.

Knowing if the Dr had reached out to Seattle like he said, he most likely downplayed and gaslit everything we and the Paramedic had said and gave Seattle nothing to work with either, I opened the medical record and word for word reviewed his discharge notes and sent the comparison to our Neuro department and called Seattle Children's.

The Neuro team was horrified and thanked us for giving them the actual details of the event unlike the notes sent from the ED.

We spent the day home sleeping and carrying Braven, as he was back to being unable to walk on his own or use his right arm normally, while our team at Seattle Children's worked to get Braven set up with a next day admission.

We were told not to return to our local hospital unless it is an absolute emergency (like it was this morning. Seattle believed us and said we absolutely did the right thing) and if Braven flares up again before they have admission set up tomorrow, to take him to Seattle Children's ED again where they had given clear instructions to admit him and not to discharge.

And so we tentatively went to sleep again...