Another test behind us

Joshua is doing well after his endoscopy and colonoscopy this morning.  He recovered from anesthesia ready to roll!  He was (unsteadily) roaming the halls of Day Surgery within minutes of waking up.  The doc said most everything looked normal for a short gut kid from the naked eye, but the biopsies and cultures collected today will tell the real story.  Those results should be in next week.  We have another clinic appointment scheduled next Friday afternoon to discuss all of the results and potential steps moving forward. 

The doctor did see a "miniscule superficial erosion" in the distal portion of the duodenal wall consistent with inflammation of the mucosal lining due to an allergic response or bacteria - that's the million dollar question.  He also found an area of lymphonodular hyperplasia in the duodenal bulb which basically means his lymph nodes are overly active in this spot.  This is apparently not uncommon in short gut kids because what little intestines they have are forced to work extra hard and this is a constant source of irritation which stimulates the lymph node activity.  Both areas were biopsied so we will know more from the histology reports next week. 

The real thrill and surprise for me this morning was learning the doctor was able to collect an aspirate of gastric fluid to perform a gut culture.  I have been fighting to get the gut culture protocol reinstated at CHOA for months because this test is helpful in identifying the specific types of bacteria causing overgrowth problems.  This would allow us to tailor Joshua's antibiotic regimen to the bacteria affecting him and not play antibiotic roulette using a standard protocol for all short gut kids.  It would also help us rule on whether bacterial overgrowth or an allergic response is the bigger culprit in terms of the inflammation and malabsorption Joshua suffers from and allow us to pinpoint a proper treatment plan.  I learned through my support group that gut cultures are routine at premier children's hospitals in Boston, Pittsburgh, and many others.  I was floored when our doctor told me this test was not an option at CHOA - the best children's hospital in the southeast!  I eventually figured out it used to be a protocol 8 years ago, but the one employee in the lab that read the complex culture results left and they just dropped the test altogether rather than training a new employee.  Unacceptable!  I hounded our GI doc for months about it and stalled the endoscopy until this additional test was included.  Our doctor went to bat for us cutting through some significant red tape and now the gut culture test will be available to any GI patient that needs it at CHOA.  I am pretty proud I was able to instigate this hospital policy change to benefit Joshua and future GI patients!  I am nervous and anxious to learn the results next week.  The gut culture cannot always be collected if enough fluid is not present, luckily our doctor was able to get a good specimen.  Growing out and reading the culture can also be tricky because there are typically multiple types of bacteria and you have to figure out which specific type is overgrowing by counting colonies.  The test is not perfect, but I know dozens of families that have benefited from it and having more information is always better.

I already know our doctor wants to order a gastric emptying test later this month to see how well Joshua's stomach contents are emptying into his duodenum because of his recent vomiting.  This involves Joshua eating radioactively labeled food (it better include bananas) and having a series of x-rays taken over the next few hours.  Sounds like a fun-filled afternoon for Mom & Josh!

Thank you to everyone for your extra thoughts and prayers this week for our little warrior!  He continues to amaze us every day with his strength, bravery, and sweet spirit!!