Wednesday, June 2, 2010

Between a Rock and a Hard Place

I haven't written a blog post in a while...  We were waiting on some definitive results of Barrett's tests and well, I didn't feel like it.  I guess I was hibernating.  So, I apologize to the blog readers, both of you :)
Here's a brief medical update, and then I'm moving on to lighter stuff for a while:
Right after the last post, we found out that Barrett's doctors thought he had leukemia.  His blood tests showed that he did NOT, which is WONDERFUL, but I was completely freaked out and we began an odyssey of other tests to look for other cancers, tumors, infections, etc.  He's had four separate sets of blood work ups, EKG, echocardiogram, two catheters for urinalysis, chest x-rays, abdominal ultrasound to look at his organs, and a bone scan.  Possible PET scan, gallium scan, and renal ultrasound of his kidneys on the horizon.

He's been evaluated by two pediatricians, his cardiologist, plus oncologist, hematologist, rheumatologist, infectious disease specialist, nuclear medicine doctor, and urologist.  And several of these doctors have conferred with their peers at other Children's Hospitals.  So, we've had dozens of doctors, nurses, and other medical professionals on the case.
The bone scan was remarkable.  They gave him an IV of radioactive fluid that coursed through his little body and allowed them to take scans over several hours.  Afterwards, Barrett himself was radioactive (including any wet diapers -- which we were instructed to take outside and not leave in the diaper genie in the nursery.  Radioactive tee-tee???  Crazy.)  Here's a few bone scan pics.

Hey, this might be fun!!
Wait, why are they putting me in that tunnel?

Okay, not fun!  Not fun!  I want OUT!

The sweet nurses gave him Dr. Bear for being such a good little patient.  Complete with scrubs and surgical mask.

But, I'm afraid he is starting to dislike doctors...

BFF Sassy has been sticking very close to Barrett.  She'll curl up next to him, patiently letting him pull her ears.  Sweet pup.

In sum, all tests are basically negative.  There are no specific findings to explain the fever.  They don't know why he's had fever for two months.  About eight of the doctors think it is "drug fever" from the very strong heart medicine.  Although fever is a potential side effect for almost any medication, Barrett's cardiologist (plus the slew of other cardiac specialists he consulted) have never actually seen this happen.  Plus, this is a diagnosis that they can't prove without taking him off the medicine.  So, we have to chose between taking him off the medicine (which is essentially keeping him alive, so NOT an option for me) or leaving him on the medicine and hoping (1) he can tolerate the fever; (2) that the fever doesn't cause an SVT recurrence, which fever is prone to do; and (3) periodically re-testing his blood for something that was maybe too "young" to show up before (I guess this is likely looking for leukemia or liver damage).  I hate my options. 

Also, just a side note, the pediatrician insists that Barrett is not contagious or harmful to be around other people or children.  He has been tested for everything under the sun and we know that Barrett does not have a contagious illness with more certainty than most any other child, who has not likely had such tests.  Just throwing that out there, so you won't worry that you might get sick if you have seen us. 

Enough of all this for now.  Here's some cute baby pictures.  Lighter blogging to return, I'm done with all of this heavy stuff!!


  1. Oh my can anyone that happy and handsome have a fever!? He's so sweet.

    PS - there are at least FOUR of us that read this blog! ;)

  2. Well no WONDER he is starting to dislike doctors!! I continue to be amazed at how well he handles all this. Such a sweet happy baby! And you know . . I bet all the bad stuff makes Barrett love us even more cause we get to be the heroes who love on him and make everything better when it's over!! :)

  3. Oh some great favorite pics!!! I can't decide which I like best.....the one laughing while holding the giraffe, the one shaking the mask from the doctor bear (TOO funny!!), or the precious one with sweet Sass (what a great pup!). I agree with mom - you and Kris are definite heroes. And I think Barrett is super-baby - he just keeps smiling and getting even more impossibly cute.

    Moment of honesty - I'm a soprano, so I'm not known for my counting ability....but haven't three of us commented on this one post? HMMMMM......

    HA HA HA!!!!