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.

Sigh...

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.

Thanks!

Stephanie

Always, Forever and No Matter What

Today has been tedious.

We finally got our records from our local gastroenterologist (the one that did the endoscopy.) I fumed as I read the records because it is so far from what happened. Things are so misconstrued I had to double check to see if we got the right chart!

Then we headed to our Primary Care Provider for a weight check. He was just speechless as we laid out the whole story. He said he was embarrassed we had been let down by so many medical professionals.

We brainstormed a few foods to try to get Xander to eat in a last ditch effort to prevent an NG tube from being placed on Monday. He told us he doesn't care what Xander eats. That now calories matter more than basic nutrition. So we'll attempt those things.

Our little Xander is terrified of medical settings now. Even putting a thermometer under his arm is met with hysteria. It is heartbreaking to watch our outgoing guy turn into a fearful, withdrawn child. He all out refused to sit on the examination table today.

Our doctor thinks that Xander limiting his intake is a combination of Xander trying to control the situation due to the pain and trauma and that perhaps he is now psychologically averse to eating.

He explained it like this: If you had severe food poisoning from say, tuna salad, after you recovered would you want tuna salad? Or if you happened to catch a stomach flu and vomited your mexican takeout, would you be in a hurry to eat mexican again?

It was hard to hear and to think that the one thing that every human must do to live (eat) is the one thing he may be truly terrified to do. My heart just shattered in bits as I wondered what is going on in his little head.

I'm so worn down. Brandon is concerned so he called my OB and let them know what was going on. Tomorrow, I have an appointment. Knowing the baby is doing okay, would relieve a burden for me. Would you pray for my appointment tomorrow? I am having an ultrasound and will discuss with the doctor the stress that we are currently under.

The children are returning Saturday! I'm so happy about this. I was meant to be a mama to many. The house here is so quiet and lonely. I am NOT one to look forward to an empty nest.

I can't wait to smother them in kisses and have them smother me too! I think seeing all their little faces will help my spirits.

Sunday, we will be celebrating DeLainey's 9th birthday even though her true birthday is Monday. It is hard to believe I've been a mama for 9 years! We have a big surprise up our sleeves for this birthday and I can't wait to see her face!

Monday, Brandon and I will be waking up bright and early to beat DC traffic on our way to Wilmington. We have two appointments there and hopefully will be able to return home that afternoon. If we end up going the NG tube route, Xander will have to stay for observation to make sure he can tolerate it. My aunt will be here with the other three children.

While I expressed frustration and annoyance with going the NG route in my last post, I don't want to be misunderstood. I want Xander better and I'm willing to do whatever it takes. Part of me just feels like this will be a band aid and no one will look any deeper. I've lost a lot of trust for the medical community and I'm just a little gunshy. I had a little chat with a medical professional friend and she gently reminded me that NG tubes aren't the end of the world and that they are temporary. She said that this could possibly relieve some of our daily worry about his intake. I get that. But as his mama, I also want a long term solution. I'm willing to do whatever it takes to see that my children reach their full potential.

I love each of them and I tell them several times a day. I love them, always, forever and no matter what.

~Stephanie