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  • About
    • My Story
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    • Fun Facts
  • Speaking
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Parenting

“What brings you in today?”

February 9, 2021 by Stacy Hurt

A Special Needs Caregiver’s Experience

Whoever is teaching the med students to ask this, stop.  Just stop.  Wait, no.  Don’t stop.  It’s a great question.  Just not one you want to hear 8,000 times when you’ve had no sleep in three weeks. 

Our 15 year old intellectually and developmentally disabled son, Emmett, started running a fever on November 29th, 2020, the Sunday after Thanksgiving.  We didn’t think it was COVID related since we have been isolating pretty seriously due to his immunocompromised status (as a result of his rare chromosome disorder) and mine as a stage IV colorectal cancer survivor.  Emmett is non-verbal, so figuring out what is causing him pain is a process of elimination, similar to a baby, since that is his cognitive and functional level (6 months).  He was burning up.  We checked him at 102 degrees, but I believe it was higher.  His face was all red, his eyes were bloodshot, he was listless, fatigued, and not breathing regularly.  We knew he was in severe pain.  Emmett is also non-ambulatory.  Even though he is incontinent in a diaper, Emmett can bear weight enough for us to wobble him to the bathroom to practice toileting.  He didn’t want to bear weight at all.  He screamed and cried in pain.  He had no appetite.  He had diarrhea Sunday through Wednesday of that week and an off and on fever.  Around Thursday, he seemed to return to baseline.  He had his energy back and his mood improved.  But the next day, Friday the 4th, he started declining again.  We thought maybe his GI system flipped the other way with constipation after the intense diarrhea, so we tried our usual tricks for that (constipation is an ongoing issue for Emmett because of his low tone and lack of mobility).  No luck.  The situation was dire, and I was scared.  In the 15 years of caring for Emmett and managing his complex special needs, we had never seen anything like this.  We headed to the Children’s Hospital of Pittsburgh emergency room.  For us to go to the ER in COVID with mine & Emmett’s health statuses, you know it was bad.  That was the last place we wanted to go.  But with my history of colorectal cancer, we weren’t taking any chances.  I’m going to be honest with you:  I thought we were losing him. 

Upon initial intake with the triage nurse, it started: “What brings you in today?” So I relayed the above details as she typed away.  Then we got into a room.  A nurse came over with a computer screen on wheels.  Asked us again:  “What brings you in today?”  I thought to myself, “Ok. Maybe the info didn’t upload yet.” Then we saw a resident.  A third inquiry.  Then the chief resident.  Then the attending.  Then a fellow.  And someone else in between.  All asking the monotonous, “What brings you in today?” It started to feel like we were on a Saturday Night Live skit.  My husband, Drew, who is way more patient than me, saw me starting to crack and held me back from saying something regrettable.  We were not new to this whole routine because we dealt with it when Emmett was diagnosed with his rare condition 15 years ago.  We had to go through this drill with at least 60 different specialists (we stopped counting at 60…) and each of their extended student teams.  I said to Drew, “This is where we are 15 years later?  No one has learned to talk to each other?”  It. Was. Annoying.  We were worked up for suspected appendicitis, sent up to the surgery observation floor for a deluxe overnight stay (TIC) with 3 bags of fluids, which did Emmett a world of good, and sent home.  I thought we were in the clear.  5 days later he declined again.  Low grade fever, crying non stop, obvious pain in abdominal area, a limp, not wanting to bear weight.  Being the healthcare ninja I am, I went to “Dr. Google” and found a condition called transient synovitis.  So just for kicks, I gave Emmett some ibuprofen to see if it would help, and it did.  We are fortunate to be friends with the ER Chief, so I called him, relayed my theory, and he advised us to come back to the ER, to rule out a few possible serious complications.  I bargained with him, “I’ll come back on one condition: that you prep your staff with the whole story so I don’t have to repeat it 50 times.” At this point, I’ve had no sleep and a non-stop crying, non-verbal, helpless kid in pain for 3 weeks.  So describing me as a bit punchy would be an understatement.  And until you’ve given your special needs child an enema on your bathroom floor, you don’t know the true meaning of desperate love. 

Back we went to the ER.  Back to intake.  “What brings you in today?”  I glared at Drew who assuaged me; “Be calm.” So now we had a 2-part mini-series that I needed to describe to a whole new rotation.  Once we got back to the room, a resident came in and well, you guessed it.  I was done.  I firmly yet courteously said, “Talk to the charge nurse.”  I think I made her cry or something because the next text I got was from my friend, the ER chief, who told me that it was a standard question, and that he had filled in the team.  It all went pretty smoothly from there (other than leaving out my medical history as one of the main things that we wanted considered).  I even got to kiss and make up with the resident.  I explained my side of things as a weary mother, and she attested that she was trained to make her own assessment.  Emmett was given a super dose of ibuprofen, his bloodwork was trended (in particular his inflammatory marker which was coming down), worked up with some imaging of his hip, and released. 

The whole episode was peculiar, yet diagnostically benign, and we were very fortunate.  A follow up with orthopedics showed subluxation in Emmett’s hip consistent with anatomic abnormalities due to his chromosome disorder, but nothing further.  You’ll be glad to know that the orthopod didn’t ask us what brought us in today… Probably because we were referred to him by Emmett’s longtime physical medicine doctor.  The physiatrist obviously picked up on my exasperated vibe and advised me that he’d bring the orthopod up to speed because as he said, “We make a good team.” 

How do we fix this incessant “What brings you in today?” problem while respecting teaching hospital and mid-level practitioner protocols?  As patients (and caregivers), we shouldn’t have to go through our whole saga over and over to 10 different people.  That’s what notes are for.  That’s what EMR’s are for.  A continuum of communication goes a long way to preserve the sanity and energy of the toilworn patient. 

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Filed Under: Parenting

Time to Be a Grown Up

November 15, 2015 by Stacy Hurt

I haven’t blogged in a while.  Really enjoyed my 2 off weeks.  My last 2 off weeks weren’t so swift… had radiation, numerous stressful doctors’ appointments, and grieved some loss.  These 2 weeks were wonderful!  Felt great, enjoyed some down time, and was mellow.  It was very nice and calm, which is good for healing.

But there’s something I have to get off my chest.  What is the deal with these parents acting so immature?  If I hear one more story about a parent being drunk at a kids’ event/party/sports practice, etc, I am going to lose it.  What the hell are you people doing???  And this isn’t “oh, Stacy’s just grouchy because she can’t drink.”  No – it’s called “Stacy is a grown up.”

Let me clarify – I’m all about having a few (too many) cocktails.  I’m the one who sends people on trips and says, “Drink 10 for Stacy!”  The trips where they are NOT with their kids!!  Or events where no kids are around.  Hey, have a field day!!  If you’re not driving, get loaded!  Whatever floats your boat!  My husband and I host an annual adult neighborhood holiday party.  Last year, I was the only sober one in the room,  I had a blast seeing how happy all of my tipsy neighbors were!!  But I am hearing an increasing trend of parents drinking and getting drunk at kids’ events.  WHY???  Cannot you not control yourself?  Do you think it’s cool?  It’s not cool.  As a matter of fact, it’s down right embarrassing to your kids and to yourself.

I view life in phases.  I had an EXCELLENT “party” phase!  It started at Penn State and stretched into my 20’s.  It was a good run.  I acted like a fool and made bad choices plenty of times.  I was never arrested, and no one got hurt.  But folks, IT’S OVER!  I am speaking to those of you like me, in your 40’s, who have kids who are watching your every move.  It’s time to move on and act responsibly!  I’m not saying to not be at the pool and have a beer or 2 with your neighbors while the kids are swimming.  A drink to take the edge off is welcomed and appreciated.  But to lose all sense of reality because you are drunk in front of your kids is absurd!  I’m sorry – tell me again why we have to have a drunk fest at kids’ sports events?  It’s not about us – it’s about our kids!!!  We are the parents, remember?  If you want to get bombed, lock yourself in your basement when the kids go to bed and go to town.  But if you are with your kids, be an adult and get a hold of yourself.

One of the worst stories I heard was that a dad was at an Indian Princess event with his daughter.  He is a prominent physician.  He got so drunk at the overnight camp, that he urinated all over himself and passed out in his urine in the hallway.  Yes, I even saw a picture of said event.  Are you kidding me?  That poor daughter.  And the guy is a doctor?  I wouldn’t be referring patients to that guy any time soon…

As you know, I try to challenge all of us (including Big Stace here) to push ourselves to be better human beings in general.  So, if you are reading this, and you’re like, “uh oh, this is me…”, then it might be time to do a little bit of self-evaluation and take it down a notch, because if I am hearing about this (and I pretty much live in a cave these days…) then it is becoming an issue worth examining.  If you are witness to such behavior, please do the right thing for the kids and give your friend a gentle tap on the shoulder, so as to say, “you may want to stop drinking now for the sake of many.”  It’s really not about us any more – it’s about being an example to the younger generation that is embodied by integrity and self-respect.

Enjoy a peaceful weekend,

Stacy

Filed Under: Parenting Tagged With: Alcohol

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I do NOT provide medical advice. No one can diagnose your condition from written or oral transmission, and communication via my website does not replace the relationship you have with a physician or another health care practitioner. I always recommend assembling a team of trusted health care professionals to guide your medical decisions.

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