Tuesday, February 14, 2012

Another Loop..

Sunday, we were so excited Xander ate about 10 fresh blueberries. Before all of this craziness, Xander would eat blueberries on top of his coconut yogurt. I thought we were getting somewhere!

And then the screaming started. It was so bad, that I met a friend up at Starbucks for a little sanity break. (Don't worry, Brandon held down the fort!)

Monday, I woke up at 5 am with a sinus headache. I was congested and sneezing my head off. I couldn't go back to sleep.

And then the screaming continued when Xander woke up. That afternoon, Xander had a bad diaper with chunks of undigested blueberries in it.

Sooooo, blueberries are now on the No No List.

In the meantime, Solomon spiked a fever.

I was begging time to hurry up, so Brandon would be home. But I managed to hold down the fort until Brandon came home at 9pm.


Then we noticed that Xander had broken out in a rash in his diaper area. We can't recall Xander ever running a fever (in his WHOLE life!), but fever followed by a rash is a symptom of strep. Plus Solomon was refusing to eat. So this morning we called and got the boys appointments with our family doctor.

We went in and our doctor immediately seemed concerned. I mean, we just don't show up for fevers usually. We are more in the camp of letting things run their course while watching carefully for concerning symptoms (dehydration, difficulty breathing, wheezing, etc.) , after all most appointments with a complaint of fever result in you paying a copay to find out your child has a virus/cold, which must run it's course. Our doctor has joked many times that he wished he had more patients like us. LOL!

Needless to say, when we showed up, he knew we had some concerns. We discussed the blueberries, the rash, the fever, and the runny noses. We also found out on the way there that Xander had a productive cough.

Ears and lungs were fine. So we ran a quick strep test that came back negative. The quick test only finds about 75% of strep so we also sent out a 72 hour culture. Some doctors would start antibiotics while we wait, but our doctor isn't quick to jump to antibiotics and the history of cdiff also makes starting antibiotics risky.

So for now we are NOT using antibiotics until we know FOR SURE that we have strep.

In the meantime, there is a chance that Xander's rash is a yeast rash, caused by the antibiotics that he took for the cdiff. So we are going to use an anti-fungal on it and see if that clears it up.

See the circle we can't seem to get out of?

While we were there, we completed a weight check on Xander. He was 2 ounces less than the appointment we had two weeks ago.

Our doctor isn't overly concerned about that. I mean, he is concerned he isn't growing in the big picture, but he isn't panicking about the 2 ounces especially since he is currently sick. Our next weight check will be done in 4 weeks.

While we were there, we also asked about the genetic (blood) test for cystic fibrosis. He said that he would be willing to order it for us, and write a letter of medical necessity. Basically, he has to make a case for our insurance to cover it since the sweat chloride test is the "gold standard." We've tried that,twice, and he just doesn't sweat. He doesn't think it will be an issue to have it approved, but he wanted to wait to have it drawn until Xander felt a little better.

Tonight, I emailed the nutritionist with the 2 week check-in information and I'm eager to see what she thinks. I am nervous that she will be more concerned about the weight loss than our doctor was, but we are trying our hardest to do what we can.

Tomorrow we will have Xander re-tested to make sure the cdiff is gone.

Here are our big prayer requests:

1. That Xander tests NEGATIVE for cdiff and that it is an accurate reading.
2. That Xander does NOT have strep and therefore won't need the antibiotics that could encourage his cdiff to return.
3. That the nutritionist sees the effort we are putting in Xander's diet and is encouraging.
4. That Xander does NOT have cystic fibrosis. This will give us something that we can officially rule out.




Heather (Iceangel) said...

Ahhhh....Big hugs. Good for you for knowing when it's time to take a sanity break! I think the anti-fungal is a good idea. Keep it up! You're a great mom! (And Brandon deserves some credit too ;) )

A.W. said...

Steph..just wanted to post and say I'm checking your blog every couple days for updates. And I'm praying!!