Emotionally Fragile Mama

November 16, 2025, admitted to Le Bonheur -- December 14, 2025, discharged from Le Bonheur - 28.5 days in the hospital

January 2, 2026, admitted to Le Bonheur -- January 12, 2026, discharged from Le Bonheur - 11 full days in the hospital

The November/December hospital stay was nothing short of terrifying. My girl was NOT herself at all. The changes in her neurological status due to the high sodium causing her brain to swell were drastic. I never want to be one to make things sound worse than they are or be what I refer to as a “Chicken Little”. I don’t always believe that the sky is falling and try to keep some hope but that hospital stay was scary for me. I felt that my girl had lost her personality, and I would never see it again. The Neurologist was optimistic that she would get back to her baseline and just needed some time but I wasn't so sure.

It wasn’t until Mini Mayhem was in the hospital this month that she really started showing more signs of being herself. She laughed for the first time and has been laughing daily ever since. When she laughed that first time, I got excited. When she did it again, I cried. It was absolutely a delight to hear. She is also urinating on her own now and not needing to be catharized any longer.

I am hoping we are home for a loooooooooooooooooong time. We saw her AL doctors on Thursday and everything looked pretty good. With that said, she is still neurostorming, almost every night. Last night she had two and I was a nervous wreck before her heart rate and breathing slowed down and she fell asleep. I didn’t count her respirations, but I can see her heart rate on her pulse oximeter and it went up to 183. She was extremely sweaty and hot and I was starting to get sweaty and hot from being anxious. Despite having her nightly, go to sleep medication and two doses of her calm down med, she still only slept 2 hours. She went to sleep at 10 this morning and is still sleeping now and it's 5 pm. That would not be unusual for her in normal circumstances but after she slept all day the day we ended up in LB in November, it makes me uneasy that her sodium could be high, low, fluctuating…..and I just don’t know. I don’t want to be that mother that runs to the ED every time I get nervous, but I WILL BE if I have to.

After our visit in AL, the plan is that if she needs to be seen, take her to our local ED for a quicker assessment and if admission is necessary, have them call AL and arrange for transfer. I feel like I need to have a weeks’ worth of clothes packed and ready to go at all times, “just in case”, so just never mind me over here wearing pajamas on a daily basis so I can keep my clothes clean.

To sit and wonder if you need to be cautious, if you’re being neurotic, making something out of nothing, not being concerned enough, TORTURE for me. During her two storms last night and the excessive sweating, did she loose too much fluid? Too much sodium? Did she hang on to enough? Did she hang on to too much? Do I wake her up and check her level of consciousness and how she responds? Do I risk her storming because she needed the sleep and the lack of what was needed triggers a storm?

Oddly, she always seems to storm at night and always within the same two hour time frame. I haven’t seen Neuro since December and haven’t been able to ask what would cause that, so I looked it up and read:

“A child having daily neurostorming episodes at the same time often points to a specific, recurring internal or external trigger, usually linked to autonomic nervous system dysregulation from a past brain injury (like TBI) or conditions such as PANS/PANDAS, involving factors like medication timing, pain (e.g., bladder/bowel), or environmental cues (sounds, light, movement) that consistently hit a sensitive threshold at that hour. Identifying the exact trigger—like a specific time for a medication change, a routine event, or underlying discomfort—is crucial for managing these intense sympathetic nervous system overloads.

Common Causes of Timed Neurostorming (Paroxysmal Sympathetic Hyperactivity or PSH)

• Circadian Rhythms & Routine Events: A specific time of day might align with natural body cycles or routine activities (e.g., mealtime, bath time, school transition, bedtime prep) that consistently overload the nervous system.
• Medication Timing: A predictable drop in medication effectiveness or the timing of a dose can trigger an episode.
• Internal Discomfort: Persistent pain (headaches, musculoskeletal), bladder/bowel issues (constipation, distention), or respiratory distress that peaks at a certain time.
• Environmental Triggers: A consistent stimulus like a specific sound (alarm, TV), light, or even room temperature shift occurring daily.
• Body Position/Movement: Repositioning or being moved in a certain way at a particular time.

In relation to Maci, it could be bedtime prep, drop in medication effectiveness or timing because at bedtime, she gets her second dose of several medications that she gets at 9 am and at 9 pm, repositioning and being moved around at bedtime as I get her ready to settle in. Does this give me answers? No, only ideas and more questions.

Being a Mama is hard. Being a Mama of a medically fragile and complex child is REALLY hard. Medically fragile child = emotionally fragile Mama.

(While I was about to post this, Maci woke up and she's in there "talking". I feel a tad better.)