Not knowing

At our last check up Pittsburgh told me that we could go every other week with checking ammonia. This week was the week we skip. Well it was supposed to be the week that we skipped, but I couldn't do it! I couldn't not know. I'm sure Pittsburgh, and some people think I'm nuts but I had to go. I had to pack all our hospital bags in the vehicle and go. Even Ryan told me this morning, she is fine. But there was that chance, the chance that the ammonia was creeping up and I'm scared to death of that. So I called Ryan's mom and we went.

Before she arrived I almost called her a million times to cancel while Lynlee played in the floor. She was blowing raspberries, chewing her fingers, being 100% normal, but when she showed up I didn't argue I went.

We got there, got the blood drew and took it to the lab. We usually know a result within 20 to 25 minutes. We waited, and waited, and waited.. Finally after 40 minutes I went up to ask about it. Maybe they forget we waited on the results, we've only been doing it EVERY. SINGLE. MONDAY for 13 weeks??? But the girl said it had 6 more minutes. Oh, I thought, they must have just been busy no big deal.

So 10 minutes later (yes, I'm counting at that point) they come to the door and told me they were going to rerun it! WHAT??? Was it high? (The only time I've ever known them to rerun it was because it was really high (like over 200) and the machine would rerun to make sure it was correct.) She wouldn't tell me anything just that she had to rerun it.

I, of course, freaked out. I can't even tell you all the things that were going through my mind. My biggest one was that I didn't know. Lynlee had no signs. Everything I thought I was looking for wasn't there. She was so normal! I was sick to my stomach! I went and called Ryan and Pittsburgh to give them a heads up. Then I went back to the lab (yes, I'm a huge pain the butt about all of this.) As soon as I walked up I was told it's still running. Well I figured that since it had only been 10 minutes, but I didn't say that.

I begged them to tell me what the first one was? Was it that high? If it was I need to know and I need to know now. Lynlee has to go on D10 we have to make transport decisions, etc... As I stood there begging for a number with tears rolling down my face I knew they would never understand what this was like for me! A high ammonia to them was just high ammonia. To me it's death. Finally she said, I can't tell you what it was because it wouldn't be accurate, the machine said there was an interference.

Are you kidding me? The machine malfunctioned and you didn't tell me?! That's the ONLY reason we are running it again? Would it have been that hard to tell me. UGH

So 15 minutes later she walked out and handed me the paper. 49.. A 49! Thank you so much for the considerate attitude, and friendly service. NOT!

Putting the drama behind me what I said was true. They will never understand what it's like to live for those ammonia results. The lab techs there will never understand what we've been through or continue to go through every day, but that's okay.

I agree with other mothers with children with this disorder. Not knowing is the worst part (other than what high ammonia causes.)To this day I'm still so scared that I won't know. That something bad is going to happen because I didn't catch it in time! What I wouldn't give for an at home tester like you test blood sugar. Yes Lynlee's poor fingers would probably be numb, but we would know! I would sleep a littler better at night, but until I'll drive to Weston. Maybe next week I'll actually skip a week? We'll see!