Chapter 5 - The Day Our World Stopped

Even though we lived so far away, it didn't take us long at all to get there. We went into the E/R at Phoenix Children's Hospital at 6am, and there was NO ONE in there waiting! So we got seen immediately. The doctors came in and after saying 'impressive' again in regards to the rash, they gave her a HUGE dose of Benadryl. I sat there and watched the rash disappear literally in 6 minutes! But then, I was also sitting there watching as it came over Cyann like a wave, in a matter of 20 minutes. There was not one spot on her body that you could see her normal skin tone anymore. She was covered in this rash and welts. They came in and took blood (for the first time of many to follow), and a stool sample. One of the doctors came in and felt Cyann all over as he listened to our long, detailed story. He was the first person to say anything about 'enlarged liver and kidneys'. I didn't even register what that meant exactly. Scott and I were trying to not get too scared at this point. We were thinking, okay, they may admit her, but then they will 'fix' her, and she will be all well and everything will be good again. After about 3 hours, a doctor came in and said, "I'm sorry, but I have no idea what is wrong with your daughter. We know that she has a urinary tract infection, bladder infection, kidney infection, enlarged kidneys, liver, and spleen. We are testing to see if she has a blood infection, but won't know for 48 hours. I don't know about the rash; it could be viral or bacterial, or both. We are calling in specialists that will meet with you in the morning. We will admit her now, and take her for an ultrasound. I wish I had more answers. But there are a lot of things going on and we need to find out what the cause or causes are."

I was just beginning to process this. I was thinking about how we had brought her in because we thought she was allergic to something! We had NO IDEA that all of those things were going on. How did everyone miss all of that?? All of those doctor visits and E/R visits. What about all of those antibiotics? She was at the doctor's office the DAY before, and he felt her tummy...how could he NOT feel the enlarged organs?? My head was spinning.

Then came the ultrasound. Scott and I both went in with Cyann. I can still remember seeing the little "circles" on the monitor. I asked what they were, and the radiologist said "cysts". Again, I didn't really process what that meant exactly. I asked what could cause them, and she said, "Usually, cysts are caused by kidney disease; but sometimes they could be caused from infection." When I heard the words 'kidney disease', I could feel my stomach sink. I couldn't believe that was even an option. And with all of her infections going on, I convinced myself that the cysts were caused by that, and when those infections are treated, the cysts will go away somehow.

By the time we came back to the room from the ultrasound, our whole family from both sides seemed to be there waiting for us. I remember thinking that I would be the one to stay that first night in the hospital, since it was the policy that only one parent could stay overnight. So I snuck out and came home to grab a shower and change clothes. While I was home, I decided to take a quick look in a family medical book to kind of get an idea of what we were up against, given the name of the kidney disease that was thrown out at us: Autosommal Recessive Polycystic Kidney Disease. All I could remember was the 'PKD' part, but there were 2 different types: ADPKD was caused by a dominant gene, but usually didn't show symptoms until much later in life. The ARPKD was the type they were talking about, caused by two recessive genes, one from each parent, rare, and often showing up in infancy. There was only a small paragraph specifically about this disease, and the line that stuck in my head was: "This disease usually causes death in infants."

So on the drive back to the hospital, I had totally convinced myself that someone would come in and say that those cysts were caused by one or all of those infections. I couldn't begin to process anything else. By the time I had gotten back to the hospital, everyone else was kind of doing the same thing I was. Trying to believe that everything was all viral. After all, there was no history of any kind of kidney disease in the family.

Around 8pm that night, 14 hours after we arrived at PCH, a doctor (who we would soon find out was only a Resident) came in and said that it was "looking officially" that yes, it was ARPKD that was the reason for Cyann's cysts in her kidneys. As soon as she said that, what I had read in that medical book came back in my head, and I just lost it! I wasn't really listening to anything else she was saying after that, until she said, "Do you have a minister or a priest you would like to call?" Now, looking back and knowing what I know now, I know she was saying that to mean, do I have someone like that for emotional support/counseling. But in the context of all that was going on, it came across to me (and pretty much everyone in that room) that she was implying we needed someone to administer Last Rights. At that point, I became hysterical. I admit it. I remember screaming and running out of the room, into the hallway of the hospital. To this day, I still feel a little guilty for not being 'stronger' that night, and during the 10 days that followed. But....what can I say? You never think this kind of thing will happen to you or your family, until it does. And then, you don't want to believe it, because that will make it real.

When I finally composed myself slightly, I came back to the room to see the Resident back in there, and she was saying that we shouldn't jump to any conclusions yet, because they were so far off from having any kind of diagnosis, that there was no way to know of a prognosis. The next day was Monday, and that's when we would meet our "Dream Team" of specialists and find out what kinds of tests lie ahead.