Inject At Home First! Cullen’s Story
I want to preface this story with the fact that the hospital we take him to has cared for him during every single crisis he has had. He was transported there at birth and transported again 2 weeks later for his second crash. He was diagnosed with Panhypopituitarism during that stay. Between the ages of 1-2 he was in the ER eight times, five of those times we had given him the emergency shot at home and he was admitted. Cullen is now almost 4 and has crashed twice in the last 3 months. This story being his most recent crash. We have NEVER experienced such flippancy and disregard for our son and ourselves before.
Cullen woke up around 530am. Was very whiny and crabby and hungry. My husband gave him his medications, hydro cortisone and synthroid, and told him he would have to wait to eat for a little bit (because of the synthroid). He fell asleep on the couch, woke up around 7 and crawled into bed with me. Around 730 I got up and left him sleeping in our bed. I checked on him about 10 minutes later and found that he had a little bit of diarrhea in his pants. I coaxed him out of bed and onto the toilet to go to the bathroom, assuming his lethargic behavior was because I had pulled him out of a deep sleep. I left him on the toilet to check and see if he had soiled my bed and when I came back he was asleep on the toilet.
That’s when the internal alarms went off for me.
I picked him up, he felt like he was burning up and he was a little limp, but responsive. I texted my husband that we may have a problem and hiked him off the toilet and into the kitchen to get a stress dose into him, take his temp because he felt warm, and check sugars (Cullen also struggles with hypoglycemia). He had woken up when I picked him up and was talking to me, this is why I didn’t give the shot at that moment, although in hindsight I probably should have. I put him in a kitchen chair and got his glucose meter (we also deal with hypoglycemia) and a thermometer. Temp was 96.7 and his blood sugars were 57. Both too low so I carried him to our bed, grabbed my phone, did a 40 second video (as my husband and I had been discussing trying to take a video of him for teaching purposes for over a year), and then gave him the shot. Just those few minutes from kitchen to bed he had become totally unresponsive. It can happen so fast.
I loaded him into the van, my husband and mother-in-law arrived and we took off with Cullen to the ER, she stayed with our other kids. We ALWAYS call the ER on our way and tell them we are bringing Cullen in, he has adrenal insufficiency, and it is inappropriate for him to wait in triage, he needs to be seen immediately. (We do not call the ambulance as we only have volunteers and we know it will take at least 10 minutes for them to show up and then more time to assess and leave. We can get to the hospital ourselves faster). I then called our endo to give him a heads up that we were going to the hospital.
We pulled up to the ER and there were 2 moms with daughters around 7/8 that walked in ahead of me. I carried Cullen in over my shoulder, limp as a rag doll. I walked up to the desk and the attendant slid me a piece of paper and told me to fill it out. I said, “I called ahead, this is Cullen Beamon, he can’t wait.” The attendant told me that he couldn’t do anything until I filled out the paper. I said, “He’s adrenal insufficient, he is crashing. He can’t wait!”
“Ma’am, I have to put his information in the computer before we can do anything for him.”
“I can’t even write. His name is Cullen Beamon – C U L L E N. Put it in the computer.”
The lady ahead of me, filling out her daughter’s paperwork, had a look of horror on her face and said to the attendant, “Dude, look at him! Send her back! We can wait, look at the poor little guy!”
So the attendant motioned to another female attendant and she said, “Well we have to weigh him first. Do you think he can stand on the scale?” Disgusted at this point, I said,”No! Look at him, he’s unresponsive.” “Ok ma’am. Well let just put him in the baby scale.”I flopped him onto the scale. At this point I wasn’t going to argue because I knew it wasn’t going to help, I just wanted to get their protocol finished so they would take us to the back. So, poor Cullen’s legs and arms were hanging off the sides and ends, obviously she wasn’t going to get a proper weight.
At this point Jason finally came in from parking our van.
“What is going on!? Are you kidding me? He needs to be in the back, he needs IVs!”
The woman said,”Well I guess they will just have to weigh him back there.” We start walking to the back and she asked us what was wrong with him. Jason said, “He’s adrenal insufficient, if he doesn’t get an IV and his medication he’s going to die.” She started walking faster and never said another word to us.
Once in an ER room, the nursing team came in and started ripping open packs for IVs and to check his sugars. The doctor walked in and introduced herself and started asking us questions while they were prepping. She started to question us, did we give him glycogen – no we don’t have any. Did we try and get him to eat something or drink some juice? No, he was totally unresponsive. Now, explain his medications, why does he take those? She questioned us over and over again and asked the same questions, just reworded them. I felt like she was trying to trip us up, make us make a mistake. At this point one of the nurses asked if they could check his blood sugar yet, SHE TOLD THEM NO, NOT TO DO ANYTHING TO HIM UNTIL SHE WAS DONE TALKING TO US. My resolve broke and I began to become the hysterical mother we all try not to be. She finally told them to go ahead, rattled off numbers for dosages of things and walked out. His blood sugars were down to 45 and his BP was 60/30.
Cullen perked up once the IVs got going. He started drinking and eating.
Doctor lady came in and said they were going to contact our endo and see what he wanted to do. She left the room and my phone rang, it was our endo. We discussed what was best for Cullen and decided he should be admitted since there was no clear reason why he should have crashed. The sniffles just didn’t seem like enough and we were hesitant to take him home without running labs and having him monitored. I walked back into our ER room and the doctor came back and said they hadn’t been able to reach the endo yet. I said, “that’s probably because I just got off the phone with him. We decided it would be best for Cullen to be admitted overnight since we don’t have a clear idea of why he crashed.” She raised an eyebrow at me and walked out. We never saw her again either.
Cullen was admitted overnight. He had a bad bout of diarrhea at one point that they are saying was the culprit of the crash. We went home the next day.
I am giving our story to all of you because you need to know that this kind of resistance happens. You can not think that you won’t have an issue because you go to your hospital that knows your kid. Cullen has never been to any other hospital but this one. Just because you are well spoken or come across fully educated in php does not mean you will be taken seriously or listened to.
I am terrified to think about how our story could have ended if I hadn’t given him the emergency shot at home. You must know how and you must do it. You literally may save your child’s life.
And if your child is sick enough to be in the ER, then they are sick enough to need IV Solu-Cortef.
Talk with your Endo, get a plan in place, have a protocol document. We didn’t think we needed one because the hospital knows Cullen. We were obviously wrong and we are getting one from our endo.
Videos taken during and after Cullen’s crash
This video may be disturbing. As difficult as it is to watch we feel that the video is a valuable tool to teach others about adrenal crisis. The family lives in an area where EMS do not have protocols to treat adrenal crisis so they injected him at home and drove him to the hospital.
The second video was taken probably 30 hours after the first. He was still on an IV line for fluids and getting a triple stress dose of hydrocortisone through the IV every 8 hours.