I wasn't expecting that much before we drove down to Rochestor, although a slight part of myself really was praying for a miracle. We spent our entire day at Mayo- 6 am to 5 pm, being shuttled between appointments and different procedures. A recap of our day-1. Met w/ a GI doc who specalizes in short bowel syndrome
2. Lab draw, which took two pokes and a very unhappy baby
3. CF sweat test, more unhappy baby
4. Really bad stool culture attempt. This included placing Eli IN a plastic stool collection container. Picture a roasting chicken (naked E) placed literally in a plastic cool-whip container for 1.5 hrs just waiting to get sprayed w/ rancid watery stool.
5. X-ray studies, lots of lovely barium and holding a screaming baby under an x-ray machine. Concluded w/ E spraying white barium out of his bum and all down Mommy.
6. Final review of the studies w/ the GI doc
Add in lots of waiting time, cranky baby, diaper changes, cranky baby, nasty hospital food, more tired cranky baby....
What I learned- good things
E does not have CF
His thyroid is normal
He has a normal appearing jeujunum and colon
What else we learned- most I already knew, but still very upsetting to get a real diagnosis
E is taking in 200 cal/kg
He's absorbing very, very little- his stool cultures were a +3, meaning he's not absorbing fats, pro or CHO
His prealbumin was 2.8, very low meaning he's malnourished
His fat soluble vitamins were all low, indicating significant malabsorption
His gut-transit time is 20-minutes TOTAL
His bowel is dilated and he has significant bacterial overgrowth right now
What does this mean? There aren't a lot of hopeful options for significantly better treatment for E. We are trying the addition of benefiber to his formula, adding a prohpalactic antibiotic, PERT enzymes & ursidol (3 more new meds) and increasing his Immodium. Eli could you all the prayers you can send that any one of these things will help improve his absorption and nutritional status.
There are two more last-resort options, but I strongly believe they will not improve Eli's quality of life. Thank you for everyone who has continued to pray for E. I know the Lord has a plan, we just have to pray, have faith and be patient.
