No Words...

Today has been stressful. We are still going to school every Tuesday for our Classical Conversations home school group. The kids love it. Since I am Brian and William's tutor I am always with Brian. When we are at home he is comfortable and can help himself to some water and the bathroom. While I can tell it is more than normal, today at school I got the full picture because Brian had to ask to go potty or get something to drink. He asked to go potty every thirty minutes. Every time he would come back with his shirt saturated with water from the water fountain. At lunch he was begging me for a water bottle. A little girl in our class left her unopened water in the classroom when she went home before lunch. Brian was eyeing that thing and kept asking if he could have it saying she wouldn't mind. When I finally said yes, "just drink it" he drank the entire thing in two gulps. I'm talking 16.9 ounces in just a matter of seconds. This was after a day of drinking large amounts of water and peeing every thirty minutes. Surely he couldn't be thirsty...
    Well, we were out of toilet paper and pull ups so I had to go to Target before getting the girls to ballet and William to guitar. (Side note: Brian has been wearing pull ups at night since he started treatment. During the summer of 2010 Brian didn't need pull ups. He was off treatment and this was before his re occurrence/chemo round two in the fall of 2010. So, when he started chemo again and started needing pull ups again we assumed it was a side effect of one of his medicines or just a sign of all his little body was going through. We didn't think much of it. It was sad when he noticed his then two and half year old sister wasn't wearing pull ups , but he was. But, we always explained he couldn't help it.) Anyway, I needed pull ups because Brian had been excessively wetting the bed every night the last week or so. He would pee through a pull up and PJ's and saturate his bed. He would wet two to three Good Nights pants every night. It was getting tiring. But if he was wetting so much through a pull up I wasn't going to go with out one. So, back to the quick Target trip, Brian peed when we left the house and started crying that he had to pee when we got into Target (a four minute trip from our house). I wasn't sure what he was going to pee because he had just gone a bunch at home, but he peed ALOT. When continued a speed trip through Target b/c we didn't want to be late for ballet and guitar. We grabbed our T.P. and pull ups and headed to the check out. On our way to the van Brian started fussing about peeing again. Since I didn't want to drag everyone back into Target with our already purchased products I told him to hold it until we got to ballet. He started crying that he couldn't. Let me just say that Fred and I have been pretty structured with our kids from the beginning. I know their cries and voice so I can tell when they are serious. He was hurting and needing to pee. Since we were parked pretty far out I let him pee in a bush by the van. I stood there guarding him to give him some privacy and mainly to make sure no one could see what we were doing. I was shocked he peed so much and just like the rest of the day it looked like water. He peed for a very long time. It was like he hadn't peed in hours and hours, but it had only been minutes. In the previous thirty minutes he went to the bathroom like it was an emergency three times. Each time he went it was excessive and looked like water.
    I got in the car and called Nemours and told them he is not OK. His behavior is not normal and he is unable to quench his thirst. During the past couple of weeks Fred and I had caught Brian shutting himself in the bathroom to drink from the sink or bath tub when he was being restricted. When we didn't restrict him to see how much he would drink it was non stop. As I am giving the nurse all this information she told me that she wasn't sure where the miscommunication came in and that Brian's blood work was taken. And according to Dr. Brown everything looked normal. Dr. Brown said if we had concerns we should call our pediatrician. I cannot even begin to express the shock that I experienced when I heard that. Brian has not seen our pediatrician in two years. Everything and I mean everything goes through the oncologist. I was so shocked that I called Fred, still absolutely stunned. When he asked me what I said to the nurse, I told him that I had asked if I heard her correctly. Then I didn't say anything because I didn't know how to respond. Take to mind that this is the same nurse that told me that Brian's blood work was not run for the tests needed to check for D.I. How she all of the sudden acted like she didn't remember that and I was the one uninformed and had some misinformation blew me away.
     I will not go into the details of our frustrations and with whom, but let's just say Fred took care of it. When I told him we were instructed to see our pediatrician and I didn't say much to the nurse he replied, "give ME the number." Long story short, Fred, on his own (read: no help from Hem/Onc) got us an appointment with the Endocrinologist tomorrow morning at 9:15 AM.