Tuesday, September 29, 2015

What is UP with James??

1)  James (4 years old) has been having some issues since May 2015 with vomiting and dehydration, requiring three hospitalizations in five months. In May, his CO2 was 11 on the admission BMP after 24 hours of vomiting.  In August, it was 9.  In September, after only 4 hours of symptoms, it was 16 (surprisingly low for how short-lived his symptoms were.)

2) This earned us an appointment with a metabolic geneticist (wha??) to see if he has some sort of metabolic disorder to explain his frequent bouts of vomiting.

3) Today we had that appointment with Dr. Schroer of Greenwood Genetics in Charleston.  What a great man.  He was kind, thorough,  and interacted with James at his level.

4) The result of our appointment today: no new diagnosis. He shared several things that they've ruled out, the names of which I cannot tell you because I've never heard them before and couldn't begin to spell/say them now.

5) What I do remember Dr. Schroer saying:  Each time he has been admitted to the hospital, James has had ketones in his urine.  His lactic acid levels in his blood have also been slightly elevated.  These things could be correlated or might not be.

6)  Dr. Schroer is running a few more tests on the blood still available from James' last hospital admission (9/14/15).  He is also checking for ketones and other things in a urine sample from today (9/29/15).

7)  Dr. Schroer is supposed to be mailing us a typed up version of everything he told us today. *phew* He will also call us in a week or so with the rest of the results.

8) James did great during this appointment.  Although he 4-year-old-whisper-asked "Can we leave now?" about five minutes into the appointment, he hung in there for the duration.  Thankfully, there were no "booboos" (no blood drawn).  Only a urine sample, which he thinks is fun to provide.  Yay for peeing in a cup!

9) Scott and I had plenty of opportunity to ask questions, but weren't entirely sure what to ask...

10) Scott googled some of James' symptoms before we went to Charleston today.  WebMD told him James has Cyclic Vomiting Syndrome.  Dr. Schroer mentioned this to us as a possibility as well.  (Dr.) Scott now feels completely validated in his google-diagnostic abilities and is accepting new patients.  CHEAP.

11)  No, none of the doctors involved in James' care to this point have mentioned anything about allergies.  He never has any skin issues with his vomiting (hives, rashes, etc).  He doesn't have diarrhea with the vomiting.  Each doctor has said "never say never," but that he is not presenting like a traditional allergy case.

12)  Yesterday and today James has had a low grade fever.  No vomiting, thank goodness.  Yesterday he wouldn't eat for most of the day, which stressed me out.  I was waiting for him to throw up once and then we'd be off to the doctor/probably hospital.

13)  That's all I know for now.  Making this post a numbered format gave the illusion of organized information.  I apologize for the false advertising.

14)  Thank you to each and every one of you who prayed for us today.  I felt notably stressed prior to today.  During the appointment I noticed my body language:  leaned back in my chair, arms draped on the arms of the chair, hands unclenched.  In a word: relaxed.  Not tense.  I completely credit the Lord himself for easing my nerves and helping me be present, attentive and not anxious.  Thank you praying folks for your time today.  (Scott doesn't know how to be anxious, so this wasn't an issue for him. He's so laid back...)

15)  After the doctor's office, we had some fun.  We headed over to the USS Yorktown air craft carrier.

James felt right at home sitting in a cockpit. 


Scott briefed us on our mission.  James approved. Momma on the other hand got a wee bit claustrophobic during our briefing and had to jet-set on outta there to the flight deck so she could BREATHE.

Anyhow...we'll keep everyone posted on what we know...whenever we know it!

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