Overwhelming Frustration

We switched cardiologists within the same practice to a more seasoned doctor since my daughter’s heart rate is jumping into 150s now for absolutely no reason. She is standing and breathing. She is walking. She is trying to flat iron her hair today for her multiple doctor appointments but quit halfway through because she feels as if her heart will burst out of her chest. According to the new Apple Watch that we ran out to buy so we have “proof” of an issue that is being called “anxiety because she’s probably nervous being in a doctor’s office”. 136. I am watching this gradual progression of worsening tachycardia as I think back on previous cardiology visits.

We were told by the original cardiologist, after her first emergency room visit, who never even touched her nor got up from behind his desk during either appointment, her echo was normal and if she felt “dizzy” she should “stop at the local store and grab a bag of chips and a sugary soda”. “You’re perfectly healthy and I don’t need to see you for another 25 years,” he concludes. We left and I literally sighed and shook my head.

We go to see the new guy. He sees a problem and assures my daughter. We schedule a follow up in a few weeks, he prescribes a different beta blocker to slow her heart, and if the problem still exists he will implant an ILR that will read her heart for the next five years. We all felt safe.

Nightfall comes. My adult daughter is propped up beside me and I have my head turned away from her as I watch Elf on loop because it’s calming to her.

“I don’t feel well,” is all she says.

I turn to look at her and begin to question the lighting. Or is it my eyes? What just happened in the moments I deigned to look away?

Ashen pallor.

Black circles beneath her eyes.

Bluish lips.

“What are you feeling?” I ask.

“I feel cold again. I can feel my lips turning blue.”

Is she speaking slowly??

“Ok” I reply calmly. “What is your heart rate?”

It feels like an eternity until we get the reading.

“58.”

“Let’s take your blood pressure.” I go into medic mode and already have the cuff halfway on.

93/52. Hmmmmm. What to do? What to do?

Options: 1- Call 911. 2- Observe a little longer and see which direction this is heading, though history has taught me to hope for the best and expect the worst. 3- Try something I saw on a video on Facebook regarding situational treatment for POTS.

I begin to yank the pillows out from behind my daughter’s head and put them under her feet. One pillow, two pillows, three pillows. How many pillows does one woman need? Good enough. Her toes are pointing to the sky.

Another blood pressure read. Another. Another. As soon as the reading was completed I was beginning the next. Heart rate after heart rate. All vitals were rising. It felt like an eternity, but it was only moments. I look down at her beautiful face and she is looking up at me. Not with fear in her eyes, but what looks to me to be relief.

“I’m starting to feel better,” she manages to say with a slight smile.

I sit down. Drained. Done.

I know if I call 911, not only will this traumatize my daughter even more, but we will sit in an emergency room under the harsh lights and the distressful sounds all night long and they will examine her, diagnose anxiety, refer her to psychiatry and send her home depleted mentally and physically.

“OK. If you can sleep with your feet elevated I can monitor your vitals all night here.” I hear myself claim, knowing I didn’t sleep last night because she was sick to her stomach from either the medication or the illness.

“Mom, am I going to die?”

I pause. She must be terrified. I assure her that I would never let anything happen to her and I will be beside her every moment and I know what to do no matter what. She is safe.

She smiles. At that moment, it hits me. She trusts me with her life and I am both terrified and truly overwhelmed with my love for her. She’s got me. Who has me? I cannot think about that. As a parent it’s too scary to think about the fact that she can be free falling here and I’m the only thing she has to keep her from hitting the ground.

She sleeps comfortably all night. I sit up beside her and do her vitals all night every hour. Elf plays in the background. It IS comforting.

I call the new cardiologist this morning. He says this is not a cardiology issue (But, her heart rate dropped too quickly and quite significantly). “Then whose issue is it?” No answer. New beta blocker. Have a nice day.

Neuro follow up. Told her to eat (though she cannot) and told her “the Zoloft will kick in soon”. Nothing else to contribute. EEG scheduled for next week.

God give me strength.

Borreliamiyamotoi@yahoo.com