I wish I could say that we had a fabulous time when we went to Kansas City this past weekend. But if I did, I would be lying. We arrived at 2am on Saturday morning after an 8 hour drive from Fort Worth and a little over 24 hours later, we were in the ER with a very sick little girl.
For those of you who don't know, our beautiful daughter was born prematurely at 26 weeks gestation and weighed 1 pound 13.6oz at birth. She was on a ventilator for her first 18 days of life and had a few other complications, but none required surgery. She came home from the hospital when she was 12 weeks old.
Outside of a few colds, she has been incredibly healthy. When she was 3, she had her first episode of croup and her airway swelled so badly that her lips turned blue from lack of oxygen. We took her to the ER, they treated her and she was released after about 4 hours. This was incredibly scary and thanks to our high deductible insurance, very expensive. She had less severe bouts of croup two times, once a year later and once last month. I thought we done with croup for at least another 6 months, but I was wrong, oh so very wrong.
We had a great day on Saturday. We had some fabulous BBQ for lunch. Emma had fun playing Wii with her Grandma then we had dinner with one of my husband's cousins and his family. Altogether, it was an uneventful day. We were all tired so we went to bed early. At 2am, we got a knock on our door. It was my MIL, our daughter was coughing. Then from across the house in the living room, I heard the sound that I dread hearing...I knew immediately that it was croup again.
Nothing quite gets you heart racing as much as knowing that you have a limited amount of time to get things under control. She was coughing without being able to catch her breath so the first order of business was to get her to calm down. We snuggled, we rubbed her back, we spoke to her softly, and we had her breathe some cold air from the freezer. No change. My husband took her outside in the below freezing weather to have her breathe more cold air. No change. I took her into the bathroom that I steamed up from the shower. Again, no change. We tried the cold air outside again. No change. At this point, we'd tried everything we could, she was still coughing and her breathing was getting more strained. We had no other choice but to go to the ER.
We arrived at the ER at The University of Kansas Hospital around 2:45am. After going through a metal detector while carrying my daughter, I entered the hospital. They printed out her wristband, weighed her, and we were taken to a room. As we walked past the desk, every doctor and nurse looked up because my sweet girl's breathing was so loud. You could see it written in the pained look on all of their faces, they knew it was croup. Within minutes we had a nurse, a resident, a respiratory therapist, and the attending in our room.
Albuterol first, no change. Next they tried some cool humidified air, no change. Then they said we would have to go for the big guns and use racemic epinephrine. The attending said they would have to observe her for 4-6 hours in the event that the drug might cause a rebound of the swelling. This was followed by oral steroids. There was no change immediately but after about 1/2 hour, she was starting to sound better.
I sent my husband back to his mom's house to get some sleep. There was no sense in both of us being walking dead. I stayed by her bedside, waiting, trying to keep her oxygen mask on. An hour passed, no one visited. After about an hour and a half, a nurse told us we couldn't stay in the ER for 6 hours so our daughter would have to be admitted. Admitted? Really? She'd had the same drug before the first time she had croup with no problems. More time passed. Finally the Pediatric residents arrived to check her over around shift change. After giving a detailed medical history, they listened to her lungs, and looked in her ears. They said she sounded fine but they said she still needed to be observed.
At 4 hours post meds, a man came into the room with a clipboard of forms. I asked him what they were and he said they were admissions forms. At that point I had to ask, "So my daughter is being admitted?" He responded "No one told you?" I begrudgingly signed the forms and a few minutes later a new resident came into the room. More questions I've already answered...I'm beginning to wonder if anyone has really read her chart. I asked her about the admission; she had no idea when Emma would be moved. More waiting.
5 hours post meds, a woman came to transport our little patient who was now anything but "patient", to the pediatric unit. I spoke to a new nurse who came in to help get her disconnected from the monitors for the transport. I questioned the advice of the admission and asked to speak with the attending from pediatrics. When he arrived with resident in tow, I asked lots of questions and explained once again that we were 600 miles from home, this is the 4th time she's had croup, she'd had this drug before with no rebound, she'd already been observed for 5 hours, and an admission would add at least 5K to our out of pocket costs. I was told she could be released but Against Medical Advice. I told them I would have to speak with my husband and would then let them know our decision.
I texted my husband to come back to the hospital. When he arrived we attempted to contact the insurance company to find out how the AMA release or the possibility of an admission would affect us. But much to our dismay, they were closed due to the holiday. Then we tried to go on their website to find out if the hospital we were at was even "in network". The site kept looping us back to the sign on screen so we couldn't even find out if we were even covered. So we asked for the resident and the attending to come back again.
We asked how long they would admit her for observation. The attending said 16 to 24 hours. I asked him if that was in addition to the 6 1/2 hours we had already waited since the drug was administered. Suddenly it appeared that a light went on in his head. Again we talked about our insurance out of pocket costs. When we said who our insurer was, the light got a little bit brighter and we got a sympathetic “Oh.” Apparently our insurer is not accepted by very many doctors in the Kansas City area and the list is growing shorter every day. I believe that was the catalyst that finally got our appeal across.
Within 10 minutes of that conversation, our daughter was given a full release from the ER. We were given a script for more oral steroids and the obligatory information sheets about croup. Emma, who didn't sleep a wink in the hospital, was out cold before we even left the parking garage.
The moral of this story is a simple one. You are your child's best advocate. You are their voice when they need it. It's not about what is best for others; it's about what is best for your child. She was exhausted and would not have slept at all in the hospital, making her condition worse. She was past the window of rebound but the hospital, to protect themselves from lawsuits, put a policy in place to admit children who are given racemic epinephrine even though this was well beyond the activity of the drug. Thankfully advocating for our child, a precious girl that we would never take undue chances with, ended with her sleeping peacefully at "home" where she could relax and get better. Her cough didn't return and we left before noon on Monday to head back to Texas. Now she has little more than a cold. Bye bye croup, we hope to never see you again!
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