Advocacy

 October 18, 2022

Bradley currently doesn’t have a dentist. And the reason is a complete saga all its own. 

In April of 2021, the dentist that Bradley was seeing at CHLA and Eric and I agreed it was time to sedate our boy, to do x-rays, a cleaning and assess whether he needed filings or teeth pulled. But before we could do any scheduling, we had to hand deliver letters to every doctor Bradley has to let them know and get them to agree he could safely have the procedure. I’ve never had to do that before, but my inconvenience to make sure he’s safe is a doable ask for me. So I drive to UCLA, and I drove to Cottage in Santa Barbara. I offered to deliver his letters to the departments at Children’s on my way out that day but was told that it was all right, they would handle all the in house docs. 

My part was done, but delays continued. When I finally got the scheduler on the phone (she just wouldn’t call me back) it turned out that they scheduled him, I had to take him to LA for his COVID test. We weren’t even home before they called me to tell me he didn’t have his clearance from Pulmonology. After this woman gave me a run around for months, she now tells me I didn’t get his Pulmonology clearance. I lit off like a rocket blasted her and her procedures, how it was not for me to get that clearance, it was their office that took on in house doctors. I told her that it was beyond ridiculous that I can drive all the way to LA to make sure that his test is safely being processed in their hospital to make things easier, and they can’t walk down the hall to take care of their part. Her dismissive attitude was pissing me off even more. I finally told her, you know what, we’re done. I hung up the phone and got on the internet. 

Here’s the thing. Although I don’t do this often, I know that everybody has a boss. And I don’t like to be that person that raises Hell, but when you are threatening my kid by not seeing to his needs and you are dismissive to me because you can’t do your job…I start researching and following the line from the person that just screwed with us all the way up to the Department Heads. So I got to a Patient Rep, who didn’t want to send me on to the Department Heads - instead she asked me to let her do some research and get to the bottom of things and get things moving along. I thought about it for about a minute, then decided to let her take the lead and wait to see what she could or couldn’t do. 

When nothing had happened by the time I took Bradley to his yearly physical, I asked his pediatrician for a follow up authorization to see Pulmonology. We had an appointment to see them in June, but it was telemedicine and our insurance sent us a letter that we had to be seen in person, no more telemedicine. So I asked if we could go in, and of course we were told no. So I asked for a new appointment, but we had to wait for a call back to get on the schedule, and we played quite a bit of back and forth, but we didn’t even have a doctor anymore because ours left…or retired or something. 

Our Patient Rep gets Bradley an appt to see Pulmonology. They think we’re new, but we get the nicest new PA, who talks with us, checks Bradley and clears Bradley for surgery and says that she thinks he should be good to go home the same day. We get on the schedule again, and we get to the pre-op this time only to have a nurse ask us if he has Cardiology clearance. I let them know he doesn’t have one. She says she’ll get back to us about that but it’ll probably be fine. Turns out it wasn’t fine. Turns out; on Monday, before a Tuesday surgical day, my least favorite person in the hospital, the Scheduler, tells me that Bradley needs a Cardiology clearance. I laughed at her, “You’ve GOT to be kidding! My son doesn’t have a Cardiologist!” She makes me call my son’s pediatrician to see if he will sign off on the clearance even though he is not a Cardiologist. My Patient Rep was my next call and she said that they would see if they could get him in to see a Cardiologist. I just shook my head and hung up the phone, called Eric and told him to cancel his leave time as Bradley wouldn’t be having surgery. 

I spent 45 minutes on the phone with Bradley’s pediatrician the next day. He actually called two different Cardiologists Monday afternoon trying to get some answers so he could safely say yes or no if Bradley was safe for surgery. But he hadn’t spoken to either one as they hadn’t called him back. His frustration over this was a direct reflection of my own. He and his office had put together a three page letter for these people to clear Bradley for surgery, but that still wasn’t enough. So we came up with a plan, he did an urgent referral for Bradley to see a local Pediatric Cardiologist, we got the approval that day and Bradley was seen the next day. That doctor sent his report to CHLA as I was leaving the office with Bradley. 

Bradley was back on the schedule the next day. He had surgery the Tuesday before New Year’s. His ENT cleaned out his ears and then put a tube in his left ear. Then Dental got to work, they took x-rays, did not clean his teeth and instead took ten teeth. We were stunned. So I had to stay with him overnight in the hospital. He did well, and then we went home. That simple. So much unnecessary for his teeth to be pulled and a tube in his ear. Crazy! 

We go back for his post-op, way longer than what they originally asked for, but CHLA is just too busy. So we go in, and this dentist goes: “Okay, so next time he comes in we need a COVID test so we can clean his teeth.” I looked at her and said, “No.” 

I love the look they give me when this happens. I said, “You’re not cleaning his teeth when he is awake and I am not putting him through a test just for him to come in here and you not be able to clean his teeth.” 

She blinks and tries to explain to the idiot mom, “We really don’t like to sedate kiddos too often.” 

I nod, “I don’t let you sedate my kid too often. But you’re not wrapping him up to try to get tools into a little mouth that is going to be screaming non-stop. We aren’t traumatizing him like that and set us back with dental because of it.” We agreed to disagree and Bradley and I left. 

Meanwhile, the Pulmonology clinic decided that it didn’t want to talk to their supplier for Bradley’s CPAP equipment. So after February I couldn’t get anything for him. Multiple calls to them and then to the clinic and I finally get a Manager who calls me back in July and tells me that they don’t send a new prescription to the supplier every six months, that just isn’t going to happen. To which I was like, “It’s your vendor, not mine. You two should be working this out between the two of you without my involvement.” 

What do I get? Suddenly, some new doctor in the Pulmonology clinic needs to see Bradley in order to update his Prescription…regardless that Bradley already had a Sleep Study and follow-up appointment set for November and December. And, we got his supplies suddenly appearing in the mail. What the Hell? 

I called his Pediatrician and asked him to send Bradley to UCLA, we spent another good forty five minutes in conference about all that has happened with his Pulmonology and everything at CHLA and he was supportive in helping us switch from one to the other. So we’re divorcing CHLA and all their biased policies. We are keeping Bradley’s ENT in the divorce for now. We are very attached to Dr Gomez. So we’ll see how things go. 

For now, we’re just trying to get through the new Pulmonologist at the end of November and an overnight EEG on November 1st. One thing at a time. 

But guys, I am just about done with these medical people. The docs tend to be great, it’s the people around them that are really starting to drive me around the bend and bringing out the fight in me just to help my boy survive and thrive. Good Night! I mean seriously! 

31For21 Blog Challenge for Down Syndrome Awareness, Acceptance and Always Advocacy.