The nurse from Dr. Lung’s office called me at work today with Maddie’s latest Cystic Fibrosis test results. I have called them a million times in the past with little reciprocity, so when the nurse identified herself I knew I wasn’t going to like what she had to say.
I need to explain the basics here so that what I write doesn’t sound too much like medical jargon. On Tuesday, Maddie had a sweat chloride study, or sweat test. A sweat test measures the amount of salt chemicals (sodium and chloride) in sweat. The results are measured against the following chart:
So, guess what Maddie’s level was? 45. Smack in the freaking middle of “borderline.” Figures. The next step is to take Maddie to a Cystic Fibrosis Foundation certified testing facility and have another sweat test administered. Luckily, Children’s Hospital Los Angeles is one of these approved facilities and it isn’t far from our house. The nurse then told me that the UCLA lab has been getting back an abnormal amount of elevated levels, and that we’d be better off going to CHLA. WHAT?! The testing materials at UCLA are SHODDY?! I NEVER would have expected that. Everything at that hospital is so fantastic and shiny! I think the nurse told me that as a way to be like, “it’s okay puppy, this is probably our bad!” but really, all it made me do was throw things at my innocent coworkers.
And then. THEN! I asked the nurse if the blood work for Maddie’s genetic CF testing had come back. She paused, and then said, “Well, that testing was never ordered. So she’ll need to get it done when she’s at CHLA.” I saw red. What did they do with all the blood they stole from her tiny arm, then? “Oh, we checked to see if her blood count was elevated, and we checked for a milk allergy.” I have been around hospitals long enough to know that FOUR vials of blood are not needed for only two tests – a CBC test can be performed with very small amounts of blood. Someone messed up, and messed up bad. They are going to have to take more blood from my little baby, and I’m not okay with it. That nurse isn’t the one who has to hold Maddie when she’s crying about a needle in her arm! Damn it!
I can’t schedule the test until I get some paperwork in the mail, so hopefully it arrives tomorrow so I can get this taken care of pronto. I’m a little shaken. I’ve been believing all of this was a formality and now I have to prepare myself for the possibility that she could have it. In my gut I don’t think she has cystic fibrosis. But my confidence has been shaken a little.
We are praying for Maddie… and waiting to hear what comes next. Faith thinks baby Maddie is so cute. She sends her a hug. She’s actually trying to make me go back to the picture of her at the bottom and it’s making it really difficult for me to comment.
Thinking of you. I’m here.
Sending more good thoughts. Go with your gut. It’s been serving you well so far.
Oh my gawd I would have been ropeable! Erin just had a blood draw, she cried and cried and cried! I can’t imagine having to go through that for no reason or because some moron couldn’t do her/his job!
The other thing is, it’s not like she’s a big person! She hasn’t got that much blood!
4 Vials of blood?? So, she needed a transfusion after? Tat seems like a lot to take at one time. BTW, is the sweat test stressful for her? And…I GOT MY SWAG AND I LOVE IT. Winning is good. Prayers for Maddie’s latest challenge.
Ack! Like you and Maddie don’t have enough to deal with!