Monday, May 3, 2021

Jello, my Favorite

Most of you know that Lexi has POTS (postural orthostatic tachycardia syndrome.) Getting her diagnosis took several years, several doctors, several tests, and several misdiagnoses. So when I suspected Brooklyn of possibly having this, I cut straight to the chase and went to the cardiologist who diagnosed Lexi.

Recently Brooklyn has had episodes where her heart races for no apparent reason. She has gone to the school nurse a number of time in the past few weeks with a heart rate over 170. That in and of itself set of alarm bells, but it also got me thinking. When Brooklyn was doing cheer this past fall, she would come home from practice with a headache every day. She said she was totally out of breath and couldn't run around the campus without stopping several times. This girl has always been fit and athletic; she used to not only run around the football field, but she was usually one of the first girls to complete the circuit. Back when this was happening, I didn't think much of it. I told Brooklyn she was just out of shape after lying around, watching Netflix, and eating Nutella for months on end at the start of the pandemic. I mean, who wasn't out of condition this past fall, right? But given her racing heart issues, I began to wonder if there was more to her fatigue and breathlessness when she was in cheer.

And for many months now, Brooklyn will get up out of bed or off the couch, walk a few steps, then sit right back down because she's lightheaded. Again, I didn't think too much of it; I just told her to get up more slowly.

But with all these symptoms together, it was just a little too reminiscent of Lexi so I made an appointment with the pediatric cardiologist. Last week he did an EKG, an echocardiogram, and a chest x-ray. All were normal. Her heart looks fine which didn't surprise me since I think she has some dysautonomia thing going on. He's sending us a heart monitor for her to wear for 24 hours, and he ordered a bunch of bloodwork as well.

So I made an appointment at Quest for early this morning since Brooklyn needed to fast for one of the tests. One of the 24 tests he ordered confused the phlebotomist at Quest. Now, I get that maybe this isn't a common test, and maybe she hadn't encountered this one before. But the doctor had written out the instructions in simple, plain English. The patient was to lie down for 5 minutes, after which time her blood was to be drawn while she was still supine. Then the patient was to stand for 10 minutes, after which time her blood was to be drawn a second time for this particular test. Well, this completely stumped the woman at Quest. She made a phone call to someone who was apparently also clueless. She also said she couldn't draw the fasting test because the doctor had written something about having it taken at 8:00. (The doctor had told us it was fasting so we should go in the morning.) Our appointment was 8:45 and that was too long past 8:00 according to this woman so she wouldn't draw blood for that test either. She just stood there, looking at the papers again and again, dropping them on the floor, looking some more and saying repeatedly that they didn't know what to do. At this point, I just asked her to return all the doctor's orders so we could just go to the hospital to have it done. I was a little aggravated because I was expecting to get to work before school started, and now we'd have to go to the hospital and spend more time waiting.

Brooklyn and I left and went to the nearest hospital, registered and walked around the corner to the outpatient lab where a friendly nurse took us back to a room with a examining table. 

"Go ahead and lie down here. You need to lie here for 5 minutes before I draw your blood."

"Oh thank you! We went to Quest first, but they didn't seem to have a clue how to do this."

"Well, I'm just following the doctor's instructions. It's pretty simple."

After 5 minutes, she drew blood for that test and the other 20+ tests the doctor had ordered. Then she had Brooklyn stand up and walk out near the desk so she could keep an eye on her while we waited for the required 10 minutes before the second draw.

I stood next to Brooklyn, asking her now and then if she felt okay. She always answered, "Yeah, I'm fine! After a few minutes I relaxed because Brooklyn hadn't gotten dizzy and was feeling fine. About 7 minutes into her wait, she suddenly whispered, "I'm not doing so good." I moved closer to her so she could rest her head on me. And then everything happened at once. I could feel her going limp, I wrapped my arms around her. The nurse flew over to us. We gently lowered Brooklyn to the floor. Brooklyn made these loud snoring sounds as we settled her on the ground. I heard an announcement over the PA about a patient down in outpatient testing. Another person brought a cool washcloth that she placed on Brooklyn's head. Someone grabbed her feet and held her legs up to help blood flow back to her brain.

Brooklyn opened her eyes and looked so confused. A dozen people surrounded us by this time. 

"What happened? How did I get here?"

She didn't understand why she was on the floor surrounded by people. Someone gave her some orange juice and the nurse whose lap Brooklyn was in held the straw up to her lips.

They all jumped in SO quickly! It was honestly impressive. Brooklyn was still white as a sheet and her legs were shaking. Someone said that they needed to take her to the ER to check her out. A couple people placed a board under her and lifted her to the stretcher that had appeared next to us. In the ER, they checked her blood sugar, placed a blood pressure cuff and a pulse/oxygen monitor on her. Someone handed me more orange juice and a cup of Jello for her. Brooklyn said, "Jello, my favorite!" 

"Really? Jello is your favorite?"

"Mom, it's from Criminal Minds, remember? Reid likes Jello."

"Okay then."

Brooklyn's face was still pretty pale and she didn't look great, but she was quoting a favorite TV show so I figured she couldn't be that bad.

An ER doctor came in and tried to ascertain why Brooklyn passed out. He suggested low blood sugar from fasting which probably played a part in it. I informed him that she was under the care of a cardiologist who was testing to see if she has POTS or something else causing the elevated heart rate and the lightheadedness. I gave him the name of the cardiologist which apparently made him feel the need to tell us a story about his name. 

"My name is Negron. One time I had a patient and my name was on her hospital bracelet, only it cut off the last 'N' on the name. The woman was black. She was very offended that her bracelet said 'Negro' and accused us of profiling her. I had to explain that it was just my name." 

Okay then. So we hung out there for a while before Brooklyn was moved into a private room where she turned on TV and watched Friends reruns. Soon she was quoting Joey, "Custard good, jam good, meat good!"

Yep, she's definitely feeling more like herself.

The doctor returned and asked if she'd eaten anything.

"They brought her some orange juice and Jello."

"You call that food? That's not food. You need something else. Do you want some chocolate?"

He returned with a small piece of chocolate. "My wife gave me two of these this morning. I already ate one. You can have this one. It'll help."

When he left, Brooklyn said, "Thanks Professor Lupin," quoting Harry Potter. "I mean, I'm not going to pass up chocolate, but I don't think this is considered real food either." I hadn't eaten anything all day either and I had to agree with her.

They had Brooklyn stand up to see if she was dizzy. Her heart rate shot up about 40 beats per minute when she stood, so the nurse had her lie down again. I explained that the racing heart was nothing new, and in fact was the reason we were there to begin with. Finally, they discharged her later that afternoon and we were able to get some actual food.

Not exactly how I was planning on spending my day, but I was really thankful that Quest couldn't figure out how to draw her blood because I don't think they would've had the resources and wherewithal to handle a patient fainting. It was a good thing we had gone to the hospital.

Next up - a tilt table test for her. We'll see how that goes.


Cathy said...

Hope you find an answer soon!!

Bonnie said...

My 23 year old daughter has POTS/EDS/MCAS. She was in the middle of cross country season, running five miles a day, her senior year in high school when her symptoms kicked into overdrive. Suddenly she could hardly get out of bed. Looking back, though, we can see she had issues for years.

An increase of 40 bpm when she stands up definitely sounds like POTS. We've had some nightmare experiences with medical professionals who didn't have a clue what POTS was. I'm hoping now that dysautonomia/POTS is a recognized side effect of covid there will be more research, awareness, and understanding.

Just a heads up, make sure the tilt table test is preapproved by insurance. Our insurance didn't require much of anything to be preapproved at the time and after she had it they decided it was experimental and unnecessary and we ended up paying for it out of pocket.

Cindy said...

Wow that's so scary. I'm glad the hospital was so attentive to her. Praying she's doing well and that you get results soon.

AnneC said...

That is scary! I hope fir all the best outcomes and correct diagnosis and help.

Melissa said...

I think my daughter may have POTS. Just starting the investigating journey, so far the GP has diagnosed borderline anemia and put her on iron tablets. Shoot me now!

Bonnie said...

There is a Facebook group called POTSibilities Parents that is a wonderful support for parents whose kids struggle with this stupid disorder.

Who's Visiting My Blog Right Now?

Home About Dawn Blog Books News & Events Press Kit Contact

Dawn Meehan 2008-. All Rights Reserved.
Site Design by Jones House Creative