Chapter 4 - The Nightmare Begins

So we spent the next week introducing Cyann to "solid food", i.e. cereal. Then one morning, we woke up with her and noticed that rash again. It was the same exact pattern as the first time, with the redness around her neck, a little on the tummy, and distinctly on the upper half of ears. This time, I was really wondering if it was viral, what does she keep coming in contact with? Or if it is an allergic reaction, what is she allergic to? We gave her Benadryl like before, just trying to keep her comfortable, and believing in the back of our minds that it would probably once again run its course in 48 hours. This was on a Wednesday. This time, I decided to take pictures of the rash, so I could show them to people that I had tried to describe it to the first time. During the first 24-36 hours, we turned the house upside-down trying to clean and sterilize anything we could think of that she may be allergic to. On Thursday, the rash was still coming back after we would give her Benadryl, and even though the 48 hours wasn't up yet, we decided to take her back to the E/R (at a different hospital) to see if something could be diagnosed. We went to the hospital where Cyann was born and signed in. However, it was mid-December and the cold-n-flu season was going strong, so we ended up waiting in the waiting room for 3 hours before we even got to the point of giving insurance information! By that time, Cyann had no signs of any rash, and she was actually in a happy, playful mood, so we decided to go home. (By the way, when we first signed in, the people at the counter were very intrigued by the way Cyann looked. No one had any idea what it could be, but the common guess was a food allergy. We kept hearing, "Wow! That's impressive!" when people would look at the rash.)

Even though I was concerned and puzzled as to what she had been in contact with twice to cause this rash, I was starting to feel relieved that it had been nearly 48 hours and seemed to have run its course. Then I woke up on Friday, and the rash was everywhere again! Now I was starting to believe more that it was an allergic reaction to something in our house. But how in the world would we figure that one out?? Once again, we gave her Benadryl and some Tylenol, too, because she had a low grade fever. In fact, for most of November, and part of December, she seemed to be around the 100 degree mark, but the doctors said it could've been because of the pesky ear infection, or teething, or how some babies may run a little warmer on a normal basis.

By Sat. morning, we decided it was time to take her in to the pediatrician's office. But being Saturday, we had to see another substitute doctor instead of our regular guy. When we got in there, this doctor looked her all over and heard our story and said that yes, it was probably an allergic reaction to something in our house. He told us that giving Benadryl over and over isn't harmful, and either we would figure out what she was allergic to, or she would outgrow it. Also, before we went into the doctor's office, I had tried to do some research and thought perhaps Cyann was allergic to her Soy formula. I mentioned this to the doctor and he suggested we try Enfamil Nutramigen. He also said that her one ear was STILL slightly infected, so he put her on ANOTHER antibiotic, Zithromax, which would be the 3rd one in about 6 weeks time. Before we left, I asked him if her tummy looked big to him. He actually felt around on her belly, and then said that some infants just have "generous abdomens"! We made a "follow up" appointment for Monday with our regular doctor.

So we went home and tried to take care of our little girl. We gave her some of the new formula, which was outrageously expensive! It cost about $22/can, and the can was half the size of regular formula cans. But we were going to do whatever it took to get her well. That was a very long night. Cyann was so miserable, and the rash kept coming back, even with the Benadryl. I started to get really scared when I realized that the rash used to come back really close to 4 hours later, which is when the next dose would be due. But by this point, the rash was coming back sooner and sooner, and worse each time. It got to where we would give her the medicine, and the rash would appear in less than an hour. She was also breaking out in hives/big welts all over her poor little body. She was so miserable, and we didn't know how to help her anymore.

This was early Sunday morning now, Dec. 15th, 2002. Scott and I were thinking it was time to take her back to the hospital, but we knew we also had that follow up visit with our regular doctor the next day. My thinking was that maybe we could go to the hospital and they would give her something or tell us what we could do to keep her comfortable until we figured out what was causing this. I had been driving to work a couple days before this and heard a commercial on the radio about Phoenix Children's Hospital. The commercial really caught my attention because the 'storyline' of it was a mother talking about taking her child to the E/R in regular hospitals, but having to wait so long, and just not being catered to children. I was thinking, "That's exactly what we've been through." And then I remember thinking, if we ever have to take Cyann to the hospital again, we should take her there. And that's what we decided to do.

Phoenix Children's Hospital is where we had to go for her EKG, but for some reason, it never occurred to me that it was just like a 'real' hospital with an E/R. And since we live nearly 30 miles away, with half a dozen other hospitals closer to us, it never popped into my mind to go there, until I heard that commercial. The funny thing is, I don't recall ever hearing a commercial on the radio specifically about an emergency room for PCH, or for any hospital for that matter. And after it caught my attention, I started listening for it, and I have not once ever heard that commercial again, or any like it. I absolutely think it was a 'sign' or message from 'someone'.