One Thursday morning about a month ago I got Maggie out of her bed and put her on the changing table as usual. I wasn't wearing my glasses so I didn't realize her button wasn't tucked properly into the makeshift hole cut into her footed pajamas. So when I unzipped her pajamas and opened them up to change her diaper, the button got caught and popped out with the violent force of a champagne cork. Blood and stomach contents went up like a geyser. And I started screaming right alongside Maggie, who was in terrible pain and shock at what her idiot mother had done.
There is a short window to get a button back in before the body starts trying to close itself up. Justin had a meeting so the rest of us hopped in the car and raced to the ER.
As always it takes a while to get back, but when we do the doctor brings us a brand new standard g-button to replace her old one. "No, sorry," I tell him as I looked the box over, "she can't have that kind as it causes severe pain and it always gets infected."
"Sorry," he says, "that's all the hospital carries. The kind your daughter has is a special order."
That's when I tell him what I'd already told two nurses (who obviously ignored me) that the Childrens GI clinic nurse who does the g-buttons gave me specific instructions that if Maggie's button ever came out, and she wasn't there, that she would have an extra one in her file drawer with Maggie's name on it.
So the doctor and nurse agreed to call the Clinic ( I should have just walked over there, but at the time I thought they could handle it).
An hour goes by...we ask again....another hour....the nurse says they can't get anyone to help them. Jessica and I take matters into our own hands...we call and talk to her doctor's nurse and plead with her to go look in this drawer - that my daughter will be in severe pain if they put the wrong button in and will surely get an infection. But the uncaring nurse doesn't help, saying that the "g-button" nurse is on leave and so they cant get into her stuff. "I know she's gone," I said, "but that's why she put this plan in place in case something like this happened." Needless to say, she didn't help.
So after five hours at the ER, the doctor puts in the button that we know will cause her to suffer. It's the worst feeling ever, and I can only blame myself for ripping it out in the first place. For not paying the $800 to have an extra button to keep at at home (since insurance wouldn't pay for an extra). For not making sure this so- called back up plan would hold.
Defeated, we leave the hospital.
I notice that we still have time to make Maggie's appointment for her monthly RSV shot. Anyone with sense would have gone home after the morning we had, but I had worked myself into a panic that Maggie was going to get some awful virus. The reason: the first thing she did in the hospital waiting room earlier that morning was put her lips on a juice box that had been left by what I assumed was a very sick child in the ER the night before. Ugh. We need the RSV shot, I tell myself.
So off to the pediatrician we went and on the way across town Maggie pipes up and says she wants a French fry. First of all, this child had not eaten since the day before so she was probably starving. Second, when your child who doesn't eat asks for ANY type of food, you are tempted to drive 100 mph to get it before she changes her mind. So that's what I do.
We get to the Baylor hospital campus where her pediatrician is located - I drop Jessica and Maggie at the door and go park at McDonalds across the street to get the french fries. I pay and run back across the street to get them at the doctor. The RSV shot takes just a second so we head down after about 10 minutes.
We walk the 15 steps to McDonalds parking lot and find that my car is gone. Ten minutes and it's been towed.
I am livid. I go into the restaurant and demand to speak to the manager. I tell him that I just bought food here and walked across the street to get my daughter at the doctor and my car had been towed in less than 10 minutes.
He tells me he has nothing to do with it; that it's Baylor who does the towing ( I find out later this was a lie; it was McDonald's).
Look, I plead to him, I've been at the ER all morning with my child. She hasn't eaten in 20 hours. She is in pain. I was a customer here, please can you help me???
Again, no mercy.
I walk our of the restaurant, now sobbing hysterically. Maggie is walking barefoot and in a diaper on the sidewalk. (Her diaper had leaked all over her clothes at the hospital and in our rush to leave that morning we didn't grab an extra set of clothes, nor shoes.) Jessica, seven months pregnant and exhausted, is holding her hand, trying to shield her from her mother's ensuing breakdown.
I call the towing company. Please, I beg, bring back my car. My daughter has been at the hospital all day - she is in pain; she has no clothes on. We were customers of the restaurant. Please.
Sorry, you are going to have to come pay to get your car at the lot.
I have no way to get there, I say. My husband is an hour away.
Sorry you'll have to take a cab.
But my car seat is in the car you just towed! How am I supposed to get there?
Sorry, I can't help you, the harsh voice says.
Please, I beg you, have your driver bring the car back to McDonalds. I'll pay whatever- I just need it now. I'm begging you.
The only way you'll get your car is if you come pay $186 at the lot. Click.
Again, no mercy.
So I sit on the curb in the clothes I slept in the night before, sobbing aloud. People began stopping to see if they could help. It was that bad.
* * * *
Thus began my own little personal March madness. Bitterness set in. And it seeped in me all week as Maggie's pain intensified. The skin around her button had gotten so raw that we had to hold her down while we fed her - she writhed in pain, her little body struggling unsuccessfully to break free of the torture. It got so infected that six days later she got a 103 fever and had to be on antibiotics. Her constant crying invoked constant vomiting, which caused dehydration and cracked lips. She was hours away from being hospitalized.
At the height of the infection we called the office to check on the status of the special order button- we knew she would not get better until she had it, even though it was going to be horribly painful to change it out.
Jessica talked to a different nurse this time. So she just casually asked her if she could go check this elusive "file drawer" for that extra button. She was on hold two minutes, then the nice nurse came back on to say, yep, she found it. The box had Maggie's name on it and everything.
There are not words to describe the outright anger I felt when I heard this. My child had suffered needlessly for a week. And when I say suffer, I mean truly in horrible pain. Pain that was agitated every time we accessed her button when feeding her or giving her meds, which is ALL day long. We watched her vomit everything we fed her. She lost 1.5 pounds that we had worked so hard for!
And all because no one at the ER or GI Clinic would take two minutes to help us.
Again, no mercy.
* * * *
A few days later we got a letter in the mail stating that we no longer had health insurance. Out of blue, no warning, just like that. I'm not kidding. It was like a sick joke.
Turns out the third party check processing company, who cuts checks when you pay bills online, didn't send our payment on time. It was a fluke thing that rarely happens. As any insurance company would be happy to get our family off their rolls, they cut us out just like that. We pleaded with anyone who would listen, but no one could help us. I get it, it's business, these people that work there are just doing their jobs. They don't care about our sob story.
We would have to go through a three step appeal process that could take a month, during which we would have no coverage. Most likely they would deny it, we were told, so then we'd have to find new health insurance, which could take months to go into effect and would pretty much end Justin's efforts to start his own business (which he did last year). He'd have to get a job at a company in a hurry because we need insurance (and group health plans can't exclude you for pre-existing conditions like individual plans can).
Anyway, the stress level in our house was reaching a new high, and I was reaching a new low:)