Crazy

It's July; my husband is still in Arizona and we are still here. I remember thinking that he would make it home with his job intact no later than May, but by June for sure; and how hard that would be--to wait until June. And it has been hard. For Grace especially. But here we are, two and a half years of living apart, and we are still living. And I mean living, not just surviving. Our lives go on, everything goes on: the rain falls in buckets here, but in Arizona the fire raged on with no rain to quell those flames, but life went on there, too. And now there will be new growth in those massive areas of devastation, just as all lives cannot stay the same and must go through a death of sorts to make room for change and growth. I know that as truth, I'm sure many people of Arizona know that too, but some moments, some days it's not enough to palliate the pain one feels.

But I'd like to get back to publicly acknowledging the sunny spots.

Back in March, Grace came down with a fever after being exposed to a friend who, we later found out, had strep throat. I watched her for signs of strep, checked her throat with a light, but after three days she continued to deny any pain or discomfort in that area yet the fevers did not let up. Gracie has a long history of unexplained high fevers (105 degrees Fahrenheit regularly) so I quickly learned to deal with them when they came. It seems that whomever she is exposed to, no matter what they are sick with, it will manifest as a high fever in Gracie, with or without the other symptoms of that other person's illness.

On the fourth day, the fever had eased up to a mere one hundred and Grace was more chipper because of it. But when I invited her to sit on my lap so I could read to her, I slowly realized that the girl could not be still. She's a naturally energetic child to begin with, even when sick, but this was different. I asked her what was going on; she said, "I'm just itchy all over, Mama." Her neck and torso were covered in a red, bumpy rash. I called her doctor's office but they couldn't get her in until the next day, so I took the appointment, but got online right away to see if I could figure out what kind of bug was attacking my daughter.

It was scarlet fever. Scarlet fever is caused by the same bacteria that causes strep throat. Most get strep throat when exposed to Group A streptococcus, but for some it manifests differently: scarlet fever. Again, I called the doctor's office to tell them my findings and the fact that she was exposed to strep, but still they could not fit her in and recommended I take her to an urgent care facility. I was actually relieved because I knew of just the one that was less than a mile away and both of my kids had been to before--I had called my insurance company before the first time I took one of them and they had said that it was within the network and it would be treated just like an office visit, but I would pay $30 instead of $25 copay--and that was exactly how it was both times. I was relieved because I was afraid I'd waited too long already--she needed antibiotics--I was worried about her heart, so I felt blessed that it worked out this way because I knew I could just go.

The desk clerks and the medical assistant, Jessica, were so compassionate and understanding at the urgent care center. But the doctor, he said, "I doubt very much that this is scarlet fever; she's not acting sick enough..." I explained how Gracie is different, how she never wants to give in to the sickness, how even when she has a one-oh-three fever someone who didn't know her (and hadn't touched her skin) would not know she was sick. He countered with the fact that her temperature was barely one-hundred right then; I had already told him how high it had been for the last three days, especially at nighttime and that the motrin was probably still holding it down. He just eyed me dubiously and said he'd do the throat swab if that was what I really wanted. (He wanted to let it "resolve itself" because he was sure it was "just a viral infection.") I knew he was thinking I had Munchhausen by Proxy or that I was an anitbiotic seeking mom, but I also knew my daughter, and I was sure she needed those antibiotics. The doctor, gave us one last ominous look before leaving the room to get the supply kit; I prayed that he would send Jessica back in to do the dirty work for him. And then there was Grace. She's a smart, intuitive, highly sensitive kid, the doctor's obvious doubt in my story and his opinion that the throat swab would be an unnecessary trauma to her easily sent her into a panic.

Thank Heaven and Earth, Jessica was the one to return with the swab kit because even to my utter shock, Gracie darted past us and hid under a chair in the corner of the room, tearfully begging us not to make her do the swab. My sophisticated seven year old was suddenly acting like a three year old. It took me hours later to wrap my mind around how she reacted, but my nursing and mothering instincts kicked right in, then and there, and I immediately went to talk her down, coaxing her out from under the chair. But it took more work to get her to keep her mouth open for Jessica--she tried, but she had so much fear about being choked that she would snap it shut at the last second. It didn't even help to let her see me getting my throat swabbed with a q-tip because Grace said it wasn't as big as the swab she would get. It was a smaller tip.

Jessica said she was going to get another medical assistant "with more experience" to help out. While she was out of the room, I talked to Grace again about facing a fear and trusting me to not let anyone hurt her; I promised her that she would not choke and that the swab would not go down her throat. It helped to have the object of her fear removed from the scene for that moment and she realized...she agreed to just let them do it but she said, "Mama? I really like Jessica, can you ask Jessica to do it when she comes back with the other lady?" And that was that. As scared as she was, she made herself remain calm so that Jessica could get in there and swab that streptococcal infested throat. It came back positive and for the first time in her life, Grace was started on oral antibiotics. And Jessica, sweet, compassionate Jessica, came back with a big (quart sized-big) baggie full of granola bars, cheese-n-crackers, licorice, tootsie rolls, suckers...she told Gracie how proud of her she was for the courage it took her to remain calm and keep her mouth open for the swab when she could tell how afraid she was, but that made her all the more brave.

Gracie made a picture and wrote a thank you message to Jessica right when we got home that day; I had planned on dropping it off to her with a bouquet of flowers within the next week when Grace was feeling better. But it didn't quite happen that way.

Six days after that, she was still having fevers, but much lower without the aid of motrin or tylenol; her rash had initially improved after three days but seemed to be at a standstill...the long and short of it is that on that sixth day I realized that Gracie was having an allergic reaction to the penicillin. This time I called her doctor expecting that he would start her on a different one. It was supposed to be a ten day course and she really only completed five full days; the fevers were still there, too, but he said no, just stop the course and start her on children's Benadryl. He said it was probably just the allergic reaction causing the fevers and rash now and that the scarlet fever was likely resolved. It was my turn to be dubious but I hoped he was right--ten days of fevers was enough for anyone, even Grace who was used to it.

As the day wore on, the hives and itchiness grew worse as did her temperature again. That afternoon after I'd asked her yet again how she was, how her throat was as she appeared to be turning into the Stay-Puff-Marshmallow-Man with red spots, and had a 102 fever, she smiled and replied, "I'm fine," in her own brand of insouciance that only Gracie can pull off while in that state.

By midnight I knew I would not sleep. Her face had become more swollen, she was restless with the high fever and though she continued to deny any trouble breathing or swallowing...what if she stopped breathing in her sleep? I watched her until five am until finally, I asked my dad and grandma (our guardian angels) to watch over her while I caught a few Zs with my hand on her chest and my face right next to hers. We woke at six-thirty; she was smiling and excited: "Mama! Look, the hives are gone!"

Oh, if you could've seen her. I struggled to compose my expression so she wouldn't become afraid. Her hives appeared to be gone to her because her entire body down to her finger tips and toes were one big, red, swollen mess. And her face--she looked like a person with botched collagen injections in her eyes, her lips, her cheeks, all over her face--she didn't look at all like my beautiful seven year old daughter; except in the light that still shined through her eyes. I mean, she was smiling, but it looked so tight and forced...so strange.

At the doctor's office, I asked about another throat swab to check for the infection since her fevers remained so high at night, but he said he was sure it was just the allergic reaction. She was started on oral steroids and a stronger, adult antihistamine. That was a Thursday, day eleven, he wanted to see her again on Monday. Good, because I still had my doubts about whether or not the scarlet fever was resolved.

I told him at that appointment, that she had had these fevers for fifteen days straight, and though there was an obvious improvement in the swelling and hives, it appeared that she was getting a new finer rash on her back that looked like the scarlet fever rash again. No, he said, it's still the allergic reaction.

On Wednesday, I was back at their office basically insisting on another throat swab. I had told him on Monday how important it was for her to be completely better by Friday, March 25th because she would be leaving on a plane at 7am by herself to see her dad who is still in Arizona, and now I was reiterating that point, along with the fact that I wouldn't ask if I didn't believe that that was what was causing her fevers. He tried to argue against it but I wouldn't back down this time, he said it would have to be a three day culture because the instant one would come back positive no matter what because she had it so recently. Fine. As a nurse I knew that the culture could show growth of the strep by Friday if it was virulent enough. I was sure it would.

When Friday came and went with no call back from her doctor, I was distressed to say the least. Her fevers had not let up and the rash was no better. She was a sick and sad girl. To her (and to me, who are we kidding) it seemed like forever with no hope of getting better before going to see her dad. She was sleeping eleven and twelve hours a day and not at all her upbeat self when she was awake. It had to be the scarlet fever keeping her down. The rash was there, the fevers, this could not be the penicillin still making her sick.

All weekend it was the same.

On Monday, before nine am, I got the call from her doctor. He said he had tried to call on Friday because as he said, "She must have a stubborn strain of strep because it was growing like crazy by Friday. But, he said he had an out-of-order phone number and didn't know how to reach me. He "kept hoping all day" that I would call him.

I was quietly angry. First: I had filled out all of the paperwork for the updated phone number during the visit almost two weeks earlier. And second: why didn't he keep trying then; why was he able to get a hold of me before his office even opened on Monday? Because all he had to do was ask the office clerk then too, as he said that was how he finally figured it out--that the paperwork I had filled out never got put into the computer. And third: he, along with that other doctor at the urgent care had been sufficiently condescending enough toward me to make me feel like I was just a crazy, MbP mom who couldn't even wait the required three days for the culture results. (But they're not open on Saturdays so I had to wait until Monday.) (Also, I knew I wasn't crazy and that I did not have MbP, but to convince these doctors of that...I felt like I was going a little coo-coo!) Not that I don't take responsibility for my own decision not to call when I so desperately wanted to, but that really was the reason I didn't. It sounds crazy to me as I type this that I didn't just call on Friday, but it's just another case for me and for others who need to trust our instincts no matter what the people of supposed authority say. I made myself not call.

She was started on the five day azithromycin that day, and by the next day I saw improvement in all symptoms. I also received an "Explanation of Benefits" from the insurance company for Gracie's visit to the urgent care; they weren't paying. Just when you think things will ease up...

I called. A nice man named William heard my story and agreed that I had no reason to doubt that it shoud've been covered as it was in the past, but that this particular doctor was not in network and that is why the insurance won't pay. He gave me the address to mail a letter of appeal. I wrote and mailed it along with a copy of the "Explanation of Benefits" which I had to take to the library to do. Then I waited.

A few weeks later I received a bill from the urgent care. I called to let them know the deal. They put my account on hold for thirty days while I called the insurance company back. They said that the letter was likely still being reviewed, that it was too soon to expect an answer yet. Fine. I waited some more. And forgot about it until...

Two weeks ago I received another bill from the urgent care. I set it down to do later. I really didn't want to, but finally, last week I called the insurance company again to inquire about the letter, explaining the story as to why the letter was sent in the first place. No record of any letter on file, she said. Oy Vey. She asked if I had a fax machine. No, hence the mailing of the first letter, but I simply said that yes, I could go to the library. So I reprinted the letter, wrote my note about sending it in March the first time...I mean really, how often does mail get lost? Hardly ever. But now suddenly, my appeal letter is just lost? Not by the U.S. Postal Service, I knew that much.

Before heading to the library, I called the billing department for the urgent care back to update them again. Lo and behold a woman named Pam answered this time. She said the story sounded fishy on the insurance company's part because she said that they have a "facility contract" with that company so it should've been covered no matter what. Then she looked up the particular doctor and said he also has a contract with that insurance company. She said that the fact that it was federal employee coverage shouldn't make a difference but that she needed a day to look deeper into it. She told me to hold off on sending the fax since it would cost me unnecessary time and money because she was almost sure that the insurance company was responsible for this bill.

Two days later she told me that it was their responsibility from the start and that this particular company is known to try to not pay--so she said she just "wrote off" our bill. You don't owe anything anymore, she said, and you don't have to worry about resending that letter to them and then waiting for an answer again. I was stunned and so grateful. Thank you Pam.

Oh, and thank you again to Jessica. (Grace and I did bring her the flowers and picture/note on March 31st when she was finally 100% better!)

Sometimes a littel bit of crazy makes us appreciate the little (and BIG) gestures of kindness and compassion all the more from those who let you know that they see you and know that you are not crazy, even if you once hid under a chair or called your child's doctor no less than five times in two weeks.