I've gotten ranty the past few times I've had to recount this to someone, so I figured...why not blog and spread awareness at the same time. But based on the reactions of the professionals I've told this to, I am apparently not overreacting.
This past Mother's Day, I spent several hours at Samaritan Hospital's Emergency Room Department with Destructo. As you may know, Destructo not only has a GI disease called FPIES but also deals with feeding and sensory aversions. Aside from having dairy and soy as food allergies, we also recently discovered that he has a sensitivity to food dye; it has adverse effects on his behavior, such has inability to transition between activities and language regression.
Mother's Day was on a Sunday; Destructo started showing signs of being “off” on the Wednesday previous, but didn't start really getting sick until Thursday night. Naturally, I kept him home from school the rest of the week. Then the yuck started...but no one else was sick. After several days of my little boy dehydrating, Destructo Daddy and I decided that it was time for acute care.
We had done everything we could. But he only wanted to drink his medical food formula and was refusing pedialyte liquid and ice pops. The formula wouldn't stay down. Destructo's lips had started to dry and crack and while he still had some tears...he was not wetting as heavily has he normally did. And believe me when I say my boy can likely put a race horse to shame.
That Sunday, he gave us a look we hadn't seen since the first time he was hospitalized. It's so hard to summarize absolute misery in a child's expression. And I really don't want to dwell on it. So after getting in touch with the on-call pediatric gastroenterologist in Syracuse who reinforced our belief that Destructo needed to go to the hospital, we were off while Destructo Daddy stayed home to care for Jellybean. I even made sure to bring a letter from I-FPIES briefly describing the condition written specifically for an emergency department visit, as well as packing an overnight bag should they decide to admit or transfer him to Golisano in Syracuse.
Destructo did fine in the waiting room. We had an iPad with us so he was playing on it. He did okay being having his vitals checked. But once we were brought back to triage the problems started.
Getting his weight and height went fine. He's used to that. Temperature went okay too. But then they wanted to get his blood pressure and oxygen levels...both of which require strapping equipment to him, he started to lose it. Despite me telling everyone up to this point he was an autistic, language delayed child with sensory processing issues, the first nurse we encountered kept repeating she just had to get these readings.
After the first meltdown, they transferred us to a different room, and thought turning the lights down would help him. The TV helped a little as well, but what really helped Destructo cope was me downloading YouTube Kids to the iPad so he could watch Thomas the Train videos to his heart's delight using the hospital's free wireless.
It was during this time I realized Destructo was being treated by a Physician's Assistant and not an actual physician. I told the PA that the GI in Syracuse wanted them to run labs and push fluids. He replied that it probably wouldn't be necessary, that they were going to give him a Zofran. If he kept apple juice and a Popsicle down after that we could go home.
So the Zofran arrives, I managed to get him to take it, and it stays down. We ask him if he wanted a red or purple Popsicle, he said purple. I agreed with getting him the Popsicle because I knew he'd refuse it, and they had already been told three times at this point no artificial food dyes. It arrives and he won't touch it. Destructo does, however, keep the apple juice down...despite the fact I knew it would make the liquid coming out his rear worse than it already was.
Grumpy lady nurse returns and I ask her about the labs again. I'm told they probably won't be necessary because he kept apple juice down so the PA was going to start the paperwork to discharge us. I again mention that my son has a GI disease and that the pediatric GI in Syracuse wants the labs done. I mention that no one else is sick in our household and there is a possibility this is an FPIES reaction. The nurse leaves the room.
A few phone calls later I get back in touch with the GI; being that he's on call the hospital has to locate him and have him call me. While I'm on the phone speaking to this very understanding man—who by the way is not Destructo's normal gastroenterologist but is in the same practice and is actually familiar with FPIES—he kindly explains he can't force them to do the labs but hopefully they will see reason and treat him. If I decide to leave Samaritan and go to Syracuse he would take care of my son. I'm on the phone with him for about ten minutes, and the PA pokes his head in the door twice.
By the third time, I'm done speaking with the specialist in Syracuse. And the PA informs me we are going to be moved to yet another room where they can start Destructo on fluids.
Oh really now? I never asked what caused this change of heart. I just wanted him treated. We move to our third room. Three nurses and I had to tag team him but one very upset little boy later the IV is in and he is getting fluids.
It was while Destructo was calmly receiving his IV fluids that I noticed the sign on the wall that said something to the effect of, “Our patients are important to us! Please return the survey we mail to you.” Oh yes. Oh yes, I will.
In the end, my forty-five pound pound little boy took about 800 mL in fluid between two bags. He went from looking gaunt to having pink in his cheeks again. And for the two hours it took for him to receive the fluids by IV...he was calm and laid down on the stretcher. They discharged us and we went home.
About the only thing positive about the visit were the hospital's free wireless and the nurses that helped get the IV in. The grumpy nurse was not among them and I'm assuming they pulled these nurses from pediatrics.
A few days later, I got that survey in the mail. And while they asked me about every employee I encountered, the PA (whose name I was able to put on the survey) got the worst of it. I haven't heard back from the hospital, nor am I expecting to.
Here are some of the gems I left on the survey:
"Did not see a doctor...saw a PA named ***** *****. He was going to discharge my son with no treatment then seemed to change his mind when I was on the phone with one of my son's specialists in Syracuse. Zofran and a popsicle were offered despite me explaining several times my son's aversion to the popsicle. I got a "look" when I explained my son was sensitive to food coloring."
"This ED has no idea how to accommodate a special needs, delayed language autistic child with sensory issues and multiple medical conditions."
"My son has a rare GI disease* which I brought in literature for (it is in the ICD-10 but not the ICD-9). The only person interested in it was the man in the office that had me sign the consent forms. *FPIES: Food Protein Induced Enterocolitis Syndrome"
"REFER COMPLEX MEDICAL CASES TO A DOCTOR AND NOT A PHYSICIAN ASST! Fortunately, my son was eventually treated properly."
If I had known how bad this experience was going to be, I would have called an ambulance for my son and had him taken to the children's hospital. It was further away. But one would think that the local, state-of-the-art hospital that brags about all the wonderful specialists it has, its brand new NICU, and all the satellite locations...that they would at least know how to treat a vulnerable, autistic child.
As it turned out, Jellybean fell sick soon afterwards. It turned out to be strep. Guess what the PA didn't test Destructo for?