When your child is sick enough to warrant a call to the doctor, you usually have to describe symptoms, etc to the receptionist prior to the appointment. Once you arrive, the nurse that takes you to a room asks, and then once the doctor comes in, you have to explain yet again symptoms, timeline of onset, what meds were given, and what interventions were taken.
Now lets say you have a special needs child with a complex history? This may be the one time you do not want your child treated like everybody else! If not for their well being, for your sanity as well!
Jaylyn received her 15 month vaccines 9 days ago. She has been running a fever since. Symptoms progressed to the point of an office visit, antibiotics, a trip to the emergency room, and a follow up with the pediatrician pending in 1 to 2 days. Its been determined that the vaccines have caused an adverse reaction. But the process to come to that conclusion has been stressful and frustrating.
#1 when calling the pediatrician with concerns about symptoms lasting this long, I do not want to be told "let me see if triage can take your call". All of this pussy footing around for months on end and this wait and see approach has done nothing but inhibit my daughter's progress. This was a 3 hour back and forth event that resulted in me demanding her pediatrician be notified. The Dr did determine that her prolonged symptoms warranted a trip to the emergency room. I tried to spare myself some aggrivation by taking her to a children's hospital where a lot of the patients are also special needs.
#2 once we arrived, we had to explain a weeks worth of events and symptoms to the person at the desk. Once we were called back by the triage nurse, we had to explain again. Juggling a squirmy crying baby, a diaper bag that was spilling out while this chick was talking over my daughter's screams and simultaneously taking her vital signs inducing even more ear piercing screams as the nurse continued to ask me question after question. Did I mention I have hearing loss and tinnitus?
#3 Once we were taken into an exam room, yet another nurse comes in to reassess Jaylyn, as if the vital signs just taken seconds ago were invalid. Jaylyn was still crying, screaming, and squirming. And of course, que the explanation of why we were there, more of the same questions, and a very unaccomodating gurney. Of course the ASSumption of a female child and a fever for a week sparks concern of her having a urinary tract infection. I know how to wipe my childs ass thank you very much, and the adhesive bag wound up leaking all over me. Awesome! At least it was enough to determine that yes they will bill my insurance company for collecting the urine, as it sat in a cup on the counter and not touched or sent to a lab. It was also dark, indicating that Jaylyn was a bit dehydrated.
#4 Because the children's hospital we frequent is a teaching hospital, of course we dont see a doctor right away, they send in a student! Yay! *sarcasm* So again, I have to explain why we were there, got asked a lot of stupid questions that I had given the answer to already while explaining why we were there. The redheaded homocidal rage was mounting at this point as I was making my own assessment of this student. The lack of confidence and uncertainty while she attempted to examine my child was overwhelming. It wound up being half assed and incomplete.
#5 3 hours later a "Fellow" came in to examine Jaylyn. His approach, ability to interact with my child without making her cry, and skills were notable. His ASSumption that my daughter's vaccines received at 15 months should have been given at 12 and that they were late made me go redhead on his ass with facts, knowlege and vaccination records indicating that Jaylyn got her appropriate vaccines at 12 AND 15 months. Better brush up on the birth to 18 vaccine schedule there friend ;-). Of course he also began asking the same questions I was asked umpteen times today, along with the student's account of her misinformed and twisted version of what she thought was going on. Although I had explained everything no less than 3 times while facepalming of course. So I had to re explain everything all over again. And it was a good thing I did. Jaylyn was then spared unnecessary blood work.
#6 FINALLY the attending physician sees Jaylyn and yes, you guessed it, the whole explaining and questions routine! And I may have forgotten to mention that because Jaylyn's complex medical history and diagnoses are so rare, we get asked a lot of questions about that too! But alas we were finally discharged!
#7 The "exit" strategy. Leaving this hospital is a process. After getting your little parking ticket stub validated, typically you insert it into a machine in the parking garage, pay, and are issued a receipt that gets scanned at the exit resulting in the electronic barricade lifting and youre on your way! So the machine is out of order and they usually have cashiers in booths at the exit, which would be easier than juggling baby, diaper bag, wallet and a transaction with said machine. I get 3/4 of the way to my car and notice a sign stating that there are no longer tellers in booths at the exits. It instructed me to go to a booth by the elevators, all the way back near where I just was. Awesome! Ok, juggling squirmy baby, diaper bag, wallet, and transaction complete. Got my receipt to scan at the machine. Finally got to the car, got Jaylyn settled and we were on our way home! Yay! If it weren't for the clueless woman PARKED right at the exit causing two lanes of backed up cars trying to leave. I see her just sitting in her car. After a few minutes I honked. As did the 20 others waiting to leave. The cashier came out of her booth, and I explained that this woman had been just sitting idle here. Ignoring all the beeps and traffic, and now at this point, irate shouting from the 5th car back. Ok so booth lady approaches clueless ladys car, knocks on her window and showed her the commotion she was causing and told her she needed to move. FINALLY! She made it all the way to the machine where you scan your receipt, scanned her receipt, barracade went up, and still she sat. SERIOUSLY?! I honked my horn and motioned her to go. She opens her car door, peeks out, and says she doesnt know what to do next....SERIOUSLY?! DRIVE! YOU DRIVE! JUST GO! being behind this woman was just the icing on the cake of my day! All the way up the winding exit, I was hoping that she wasnt turning right. She turned right. I saw my opportunity to whip around her and I took it.
#8 I arrive home to explain all that had happened to my family and then bitch blog about it to vent and feel better! But perhaps those that work in the medical field (myself included ) can learn from this. Not all children are tolerant of excessive and unnecessary poking and prodding and not all parents of special needs children have patience of saints when it comes to the barrage of repeated questions.
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