And yet, another marathon!

Well, I jinxed it. But not in the way I thought I might - we're still waiting for word that our visit to Dr. Shields next Monday is approved. However, when I asked for "positive urine thoughts", I should have instead added "and an easy blood draw as well!" As I mentioned in my last update, the metabolic tests were approved and I had to take Jenelle to Quest Diagnostics to turn in her urine sample and have blood drawn. According to her doctor's orders, Jenelle had to be off her Bi-Citra Supplement (the one she gets for her metabolic acidosis) for 3 days, and she had to fast for 6 hours. We stopped her Bi-Citra on Tuesday and I took her to Quest on Saturday for the blood draw. Miraculously, I was able to get almost an ounce of urine for the sample, and Jack thought I was a being silly jumping up and down around the house celebrating.

So we arrived at the only Quest location open on Saturdays to find a huge line. After waiting 45 minutes, they took our written orders and told me to wait. Another 20 minutes and they called our name. Thinking it was our turn to draw blood, I was surprised when they instructed me to go back to the front desk. Apparently, the tests ordered by Jenelle's doctor couldn't be done on Saturday. They had to be delivered to many different locations the same day they were drawn, and that just couldn't happen on Saturday. And one specific test was only to be drawn on Tuesdays or Thursdays, according to my insurance. To say I was frustrated is putting it mildly. Our doctor didn't warn us of this, and it would have been a little more convenient if they had looked at my orders when I arrived.

At this point, Jenelle was starving and had been off Bi-Citra for 3 days as instructed. Surely, if they were open on a Saturday, then they had a way to deliver the specimens on a Saturday. No such luck. Then, they explained that they couldn't draw "children" on a Saturday. And this from a lab that was directly across the parking lot from Children's Hospital of Orange County. Seriously? I then asked what they were going to do with the urine sample and they first explained they would have to toss it. I was not going to give up using a good sample so I agreed to allow them to hold off on one of the two tests ordered for her urine, and they said they could run the other test because it was a routine procedure done in their office. So after trying my best to persuade them, we left. I kept Jenelle off Bi-Citra through the weekend and took her back to a different Quest lab first thing Tuesday morning. Again, I had to wait at least 45 minutes. Not because the lab was crowded, but because they had to "research" how much blood they needed for each specific test. The silly thing about that is they had copies of the order from Saturday - don't you think they could have done that before now? Once they determined they needed 9 vials of blood, they took us into a special room for the draw.

Ironically, I should have known we were out of luck when the phlebotomist remembered Jenelle from when she was a little baby. She said, "Oh, this is the baby I could never find a vein on!" Nice! I re-assured her that Jenelle hasn't had a blood draw problem in a couple years as her veins were much bigger than they used to be. Sure enough, Jenelle turned into a turnip, and it took 5 sticks to get the needed 9 vials. Jenelle fought real hard and ended up scratching me in the process. As we left, our new "not so favorite" phlebotomist asked me to kindly never return because she felt like an evil vampire woman for torturing Jenelle so much.
Oh yes, that one urine test we decided to wait on? Turns out Quest can't do it at all! I have a call into her doctor to find out what to do next. We may need to take her to Children's Hospital Los Angeles to drop off the urine, or hopefully they can take it at CHOC. I'm sure that will require special authorization as well. Either way, we'll need another sample. Please keep those fingers crossed once again!

Jenelle is doing really, but her seizures keep increasing. That appointment at UCLA can't come soon enough… hopefully on Thursday I'll hear word that we're approved. Her school informed me on Tuesday that Jenelle's new favorite drink is chocolate milk! They've been teaching her to use a straw and they said they've seen the most success with chocolate milk! Jack doesn't like chocolate, so I may have to pick some up next time I make it to the grocery store. Anything for our sweet little girl!

Thanks again for the positive thoughts and prayers, and for taking the time to read my last update. I appreciate your support and sympathize with many of you who have had similar experience with HMOs. What a nightmare!

I'll keep you posted after our trip to UCLA!