So, it’s been almost four years since we had to be way more engrossed in the medical community than we’d ever wanted to be… well… as parents 😉 … I wouldn’t mind so much being on the “other side” of things… but I digress. In that time we’ve been quite fortunate in the medical professionals we’ve encountered. Sure, we started off with the real winner of a pediatrician who at first glance at Alyssa’s skin said “Oh, put a little vaseline on it… she’ll live.” However, we wound up with a pediatrician who anyone would be blessed to have and aside from the initial doctor we have been surrounded by the same people who saw our daughter as an infant. Each of them take the time to talk, listen, and come to an agreed upon decision when it comes to Alyssa. I hear horror stories of doctors with a “God complex” and people being bullied into decisions about their children. I’ve always felt like the silver lining of Alyssa having such a rare disorder is that the doctors in our lives work with us to make decisions that are right for her… even if they’d seem wrong for a typical kid.
Then, this morning happened. At about 3:15 am Alyssa woke up and was just acting “off.” In hindsight, she was acting quite the same as she did the last time she had a big seizure. At 3:30 I had Neil come in and grab her. As soon as we unswaddled her it was apparent she had a fever but we didn’t want to dose her with motrin without knowing how high it was. She began to seize but stopped right around the one minute mark. We loaded into the car to go purchase a thermometer. You know…because they freaking grow legs the moment you actually need them. Took her temp in the parking lot… 103.5. OK. We decided to go home, medicate, and see how she did. Then, about a mile from home she started to seize again. We made the decision to turn around and go to the super close hospital… I’ll be nice and let them remain nameless. 😉 Better to be safe than sorry with two seizures that close together. She seized for nearly five minutes and stopped just as we arrived at the ER. We were quickly brought in, everything went speedily, and after a tylenol suppository she seemed much more herself. I was initially quite impressed with the efficiency of the staff. They ran the standard blood/urine/chest x-ray tests. The doctor seemed relaxed, willing to listen, and kind of “let’s just make sure there’s nothing underlying before you’re on your way.” We figured once the results came back they’d send us on our merry way.
Unfortunately… there was a shift change. I had dozed off with Alyssa on the bed while we were waiting for test results to come back. Well, the new doctor came in when I was half asleep and told us he thought she should be admitted by ambulance transfer (because this hospital doesn’t admit kiddos) and he was giving her a round of antibiotics before we left. I responded a bit confused, and then as soon as he walked away… Neil and I started to talk. As I woke up a bit more I realized how confused I was about the “whys” and about the fact that he hadn’t asked a single question…just spouted off what was going to happen. Luckily Neil was alert enough to ask me the “why” questions. I got up to go find the doctor and about 45 minutes later he finally came back to us.
I expected to have a more coherent discussion with the doctor, reevalutate things with him after he knew more about her history, and make a more appropriate game plan based on Alyssa’s history instead of making it based on the textbook. Instead? He had essentially already made up his mind about exactly what was going to happen, he didn’t want to listen, and he fought me every step of the way instead of working with me. The first thing we addressed was the ambulance. We wanted to know why. His only fear? Her having a seizure in transport. Um. OK… I get it. I get the liability. The harsh reality? Our daughter has a seizure disorder. Every time we get in the car we take the risk of her seizing enroute. If anything on this morning we’d be more prepared than typical. We’d have consented to ambulance transfer if he was worried about her breathing, concerned about her contaminating the community, etc. We did wind up convincing him to let us transfer her… although… we wanted to know why she was being admitted. She hadn’t seized again, there was no “obvious” reason for her fever, and she was acting pretty much herself at this point. He was becoming more and more agitated by the fact that we were not simply smiling and nodding. I asked if he would be willing to consult with her neurologist prior to the transfer. After all, we totally understand that it’s a lot to look at her chart when you’ve never opened it before. He agreed…less than willingly. Then? The moment that made his entire head turn red in frustration. Why the antibiotics? He said…and I quote to the nearest and best of my sleep deprived ability… “It’s the standard of care for a child her age with a fever from an undetermined source. It’s like putting on your seat belt when you drive a car.” To which I replied “OK. Part of me gets that. However, Alyssa is not a standard patient. Also, you put on your seat belt because you have to.” …ready for the reply? “Right, think of it just the same. You have to do this.” Um… NO. At that point his head was red, I was fighting back tears of frustration due to exhaustion, and I just wanted the conversation to be over so we could move to the next step. So, I told him we’d consent to antibiotics if he found one that was not grown on a dextrose base… since our child is potato intolerant after all… to which he replied “I don’t have time for that…I’ll try to find a nurse who does.” Um…yeah. You will.
A bit of time passed and he returned saying he spoke to the neurologist who felt she should be transferred but first wanted to give her an additional dose of one of her seizure meds since her levels were down a bit. Fine… we still felt it was overkill…but maybe we were missing something. (In hindsight I think he talked to one of the other neurologists in the practice who are not as familiar with Alyssa, but I won’t know until Tuesday). The nurse came in with the antibiotic and said that the best she could find was that it said not to mix it with other dextrose derived products. We waffled a bit but in the end? I consented… I still wish I hadn’t. It frustrates me that I was to a point of exhaustion where I just did not have the strength to properly advocate. I’m not going to beat myself up about it, but next time? There will need to be an elevated blood level that indicates bacterial before they get near her with antibiotics. I just feel like he was so concerned with liability that he was over-covering…which I understand…but at the same time? I seriously feel like we were bullied.
After the antibiotics and seizure medicine had made it through the IV we headed to the other hospital. When we got there and the nurse asked why we were there I didn’t even know how to respond. LOL! My favorite part of the visit was when she asked what meds they had given her at the first ER and I listed antibiotics and she said “Why did they give those to her?!” and I replied “..because it’s the standard of care for a patient her age with a fever from an undetermined source.” Her face? Looked EXACTLY how mine felt when the doctor said it to me. HA! I said “THANK YOU! Thank you for making THAT face!” So, they checked her stats, talked things over with us, and called Alyssa’s neurologist. The pediatrician came in and said that the neurologist said as long as we felt comfortable we were safe to go home. YAY!!
So, it was a long day… with a very small amount of sleep… but here’s hoping everything passes quickly and she’s back to her “normal” self soon!