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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