4.28.2008

Every time I mention cystic fibrosis, take a shot.

What are you looking at?Maddie just had an IV inserted in her right arm. She cried and whimpered the whole time and it about broke my heart. Now she is sleeping so deeply I think the USC Marching band could come through and she wouldn't notice. Just another mommy scar that I will throw in her face when she's an ungrateful teenager.

The IV is for her CT scan tomorrow morning. This is the test she has to be sedated for, because it's imperative that she not move so the docs can get a clear picture of her lungs. She can't have any formula for four hours before the scan, so from 4 am to 8:30 am she will be cruising on an empty stomach. I can give her pedialyte from 4 to 6 but something tells me that isn't going to cut it. I can already predict what will happen - she will be STARVING after the scan, and she'll wolf down her food so fast that she will throw it all back up, and then the doctors will start the reflux talk in earnest. Let's hope I'm wrong.

She had a bunch of blood drawn for tests this morning. One test is checking to see if she has an allergy to the formula she gets. Another pointless test. The other tests were, I'm told, the usual work up. And then there was the blood taken for the...CYSTIC FIBROSIS TEST! Yep, they are testing her for it for the THIRD TIME! When Dr. Lung told me that, I almost slapped her. She said that the first two tests Maddie got didn't test for all the different mutations of the CF gene, just the most common ones. I'm so frustrated with this. All my reading says that in order for a person to get CF, both parents have to carry the CF gene (you can carry the gene and not have CF). I don't have it. I just don't understand how Maddie could. Seriously, if someone out there reading this can explain it to me, please do.

I feel like they are determined to diagnose her with this. Dr. Lung brought by a CF nurse today on the sly. She introduced her by saying, "this is Nurse Blah, who works in my office." She didn't say she was a CF nurse, we only found out because we heard her introduced that way in the hall outside Maddie's room after she left. It's so frustrating because of COURSE if she has CF, we want to know so we can get her the best treatment possible. But this isn't some willy-nilly virus we're talking about here. It's a disease that would kill her before her 30th birthday. That is why we don't refuse the tests.

There's something wrong that I have been driven to the point that I don't want Maddie to have CF not because it is fatal, but because I don't want these people to be right. That's some health care system we have here.

With all this crap I forgot to mention some other, much happier things. Maddie's grandparents, aunt, uncle, and cousins are all here from Northern California. It sucks that her aunt and uncle have only seen her in the hospital, and it makes me sooo sad that Maddie hasn't met her cousins. Her oldest cousin is three and half and he keeps asking when he will get to meet Madeline. They will be here until the end of the week so we have our fingers crossed that she'll be out of the hospital by then. Wait, this is supposed to be happy stuff!! Well, Maddie has been thrilled to see her family. She smiles away when they come in the room. Even if the surroundings aren't ideal, it is still nice that they can see her happy.

I bought Maddie a Bumbo seat when I went on my Great Target Spending Spree last week, so I brought it in today. I sat her in it, fully expecting her to cry or fall over, but to my delight, she really worked her stomach muscles and sat up in her chair for about five minutes. It was so cute, and, of course, she smiled the whole time. I'm glad I bought it.

Best for last - she has started laughing!!! Yesterday I was playing with her and she got a big grin on her face and then giggled. It was the best sound in the world! I kept playing with her and I got a bunch of giggles out of her, so I know it wasn't a fluke. Her uncle got a laugh out of her today, too. I'm so glad I have this little baby that can still be happy despite getting stuck with needles and squeezed with cuffs. I try to follow her lead.

Keep your fingers crossed tomorrow at 8:30 am that Maddie's CT Scan goes well!!!

5 comments:

Bec said...

She's such a cutie pie!

I can't imagine how frustrating it must be for you to have to deal with the CF thing over and over like this. They seem determined to chew up money for unnecessary tests don't they?

I hope the scan goes well.

Memphislis said...

I know how you feel about the CF tests. My best friend's daughter (now 8 1/2) was tested and tested as a baby, each time with a negative result. Turns out, she is extremely allergic to milk AND soy products, and the CF symptoms she was having were a reaction to the formulas. You guys are still in our prayers each day. When do we get a picture of Maddie in her Bumbo?

Kristin.... said...

I don't know how she manages to get cuter each day, but she does! We're keeping our fingers crossed for good news today.

Gemini Girl said...

Keeping my fingers crossed!

They tested neve twice for CF. First in the NICU, then when she had already been discharged. I doubt maddie has it since you are not a carrier. I def feel like i understand how pissed off you are about always being asked- since cf is quite the scare.

so glad she is doing well and is laughing! I want to mush her!

Memphislis said...

Well I (obviously) couldn't see the picture when I left you the earlier comment. Man, you can tell how tiny Maddie is with the perspective of her seat. What a doll.