(Hold on tight, this one’s a fast ride, and OH TOO INTERESTING!)

Proud big sis
So stinking cute!
Lung collapse, not thinking we’ll ventilate…
“Just for shits and giggles…”
(I’m sorry, you’ll understand why that’s written there after while. Besides, I’ve already learned my blog is “Rated ‘R'” because apparently I talk about death too much…imagine that?!@#$%^)
So, back up a year and a half and you’ll find Noah has the worst diarrhea. He’s only breast fed and I know ‘breast is best’ but I have a feeling it’s not best for him, though, the thought doesn’t occur to me to switch since he seems to be eating okay. FF to August 2nd, we’re at TCH Denver for an outpatient neurology visit b/c Noah’s eyes ‘wiggle’. They admit him. He stays there the rest of his life. Everyone focuses on his eyes. Geneticists and Neurologists assure us our son has a rare disorder and that he’s going to die. One doc even says, “If we don’t find out what it is here, we’ll for sure figure it out in an autopsy.” (Oh yeah!?#$%^& You can kiss my…) Anyway, after 3 weeks of tests costing BOAT LOADS OF CASH (TG for BCBS), no one knows anything. One med student on the 2nd day decided to send off Noah’s stool to the CDC for Botulism testing, but all docs assured us that nothing would come of it and that breast fed babies have all sorts of interesting stools. Really?!#$%^ then why do all breast feeding books say it should be yellow, cottage cheesy, and puffy?! (Maybe someone should rewrite those books? NO! Don’t! It’s supposed to be yellow and cottage cheesy, not look like Superfood Odwalla Juice! Sheesh!) (INTERESTING) So, after all DNA sequencing, leukodystrophy testing, and genetic testing come back negative, Thursday, August 24th happens. Long story short, the attending comes into Noah’s PICU room in full contact protection and asks me if we are going to ventilate Noah. I ask why. He says because there are dozens of dead mice at the CDC. My heart leaps for joy! Why? Because I knew all along in my heart it was infectious not “Oh, Noah’s the first boy on earth to ever have his condition, blah, blah, puke!”
(Anyway, yes I’m feisty today! You’ll see why…)
So, PICU is in pandemonium state! Three major drugs are given to Noah. CDC reports that when Noah’s stool is diluted no mice die, but when it’s full strength, all die. I run to the fridge/freezer and toss all my breast milk, except a few samples for testing. The boob Nazis at the hospital are mad at me, but it’s MY FREAKING KID! GO MILK YOUR OWN KID! Anyway, Noah is now vented, sedated, and on antimicrobial/biotics/fungals. His POOP TURNS YELLOW AND PUFFY AND HE PERKS UP, EXCEPT HE’S SEDATED.
Take a breath, Ade!
Okay, so, the CDC uses all of Noah’s stool sample killing lab mice, so they want a little more. Okay, except now you are receiving stool that has been on drugs for a few days! Duh! Second sample, NO MICE DIE. Oh really, is this rocket science? #$%^&* Anyway, when a kid is on Vanco, Gento, and Flagyl, can anything naughty still live in their body? They remove Noah from Flagyl b/c he doesn’t have C-diff, but he remains on the other drugs. Slowly, very slowly, his stools turn yucky again. He gets weaker, weaker, weaker…Hospital concludes Noah’s stool sample must have been contaminated. I ask if that happens a lot at the CDC. They say NO! I say then why did it just happen to happen with Noah’s stool?! #$%^& Anyway, TO THIS DAY, THE CDC DOESN’T KNOW WHY NOAH’S STOOL KILLED MICE. (That’s scary, folks…)
FF to last month, 2008. I feel very strongly that I should visit my family doc b/c it’s been 4+ years since I’ve had a physical. Heck, does he even know Noah was born, lived and died? Sheesh, when you’re busy, I guess you forget to contact some key players…Anyway, I go see Doc G. He’s a great guy. Fixed my back with acupuncture after 7 years of pain. Anyway, he asks how I’ve been doing. I give him the 20 minute abbreviated version of a REALLY LONG STORY. He hugs me, says he’s so sorry! Asks why I am seeing him and how he can help. I inform him that through our own outside testing with Noah we uncovered some interesting things in his blood. The antigens for a spirochete. I tell him all my symptoms, along with Em’s, from years ago to today. He says he’ll order regular blood work, also some rheumatoid work, and, “JUST FOR SHITS AND GIGGLES”, the antibody work for me. He said he was sure the tests would come out negative, but “just for shits and giggles”, let’s give it a whirl! (Okay, I had never heard that expression. From what era does that originate?)
He also gives me the name of an Infectious Disease doc, the best in the state, so I can tell him Noah’s story and trudge further into this crazy mystery with an expert. He tells me to wait until my blood work is back, but eventually I should contact that guy.
FF to yesterday. I got a call from my doc’s assistant. She said my labs were back, that she was faxing them to the ID doc and that I was to make an appointment with him right away. (Okay, so I’m pretty sure it wasn’t my rheumatoid tests that would merit a trip to the ID doc…)
You may ask if Noah ever got the test I had done last week. Well, he only had a portion of it. My doc did the further, more in depth test. Noah’s was the preliminary test and since it didn’t show that he was producing antibodies, they did not proceed any further. (Bet they wish they had…) I bet it would have shown what mine revealed.
Anyway, I’ll keep you posted. This ride just gets more and more interesting. Wonder if my poop would kill mice? If it did, would the CDC even tell me or know WHY?! $%^&*



18 Responses

  1. wow. I am very intrigued! you HAVE to keep us updated.

    you wrote that so well, I do believe my pulse increased while reading it.

    AND “for shits & giggles” is just about my favorite phrase, and to see it used so much in one post…well, I enjoyed that aspect of it.

  2. wow. That’s a lot of information to take it, and a lot of emotion to process! I have no idea what to say or really what to pray for – but I’m praying for you.

    When is your appt?

  3. That is insane! What a cliffhanger, I will be checking by frequently to see what the results are. I am praying for you Adrienne. It’s about time for some answers! My heart’s racing and I am so excited for you to hear what’s been going on for so long.

  4. Praying some answers are in the near future.

    The phrase your doctor used is one my husband says all the time…and we’re in our 40s. Guess that doesn’t answer your question.

  5. Dear Adrienne,
    I am writing to you from the other side of the world – from Russia. I bumped into Noah’s video on Youtube and was so impressed, i couldn’t help crying.
    I can imagine what you have gone through, i lost my little brother at the age of 2, he passed away from leukemia. It’s unbelievable that they couldn’t determine Noah’s diagnosis for so long! Hope the answer will be found very soon.
    I must say, you are the one strong woman and you have an amazing family!

Leave a Reply

Your email address will not be published. Required fields are marked *

Email is FUN!

You guys, let's stay connected! Enter your email to receive blog notifications and other insider news!