Day 8 – no more poop

We can all stop praying for poop now, because the fluoroscopy imaging yesterday showed that her bowels are free and clear. It also shows that her lower digestive system, from her g-tube/stomach down to the caecum, all functions correctly. So that’s good news … right?

Parenteral Nutrients (PN) + Lipids (white bag)

Of course, the fluoroscopy test required 50 ml (< 2 oz) of barium to be pumped into her stomach. It’s like a single gulp. She used to take 180 ml of formula in 15 minutes with no problem. So a couple hours after the test, the cramping, screaming, retching and vomiting commenced and continued for a good 3 hours. That sucked. She also managed to rip out her IV during one of the retching fits, so we moved her IV once again. This time it’s in her left foot. We have 1 limb (the right foot) left that hasn’t been poked. She was worn out for the rest of the night and slept through our family’s visit.

GI doctor came in for a consult. He ran through all the ideas he had … very honest and open, which I really appreciate. Some of his theories would probably freak the crap out of other parents, so I wonder if he’s this open with everyone. In considering metabolic or genetic disorders, he asked if hubby looked like me … Asian, tall and skinny. I laughed really loud and probably startled him. Then without thinking I said, “he actually looks like you except more thick and square and Palestinian.” So he brightened up and said, “well, I’m Palestinian, too!” Ironic … and a relief I didn’t offend the guy!

His game plan was to try a slow drip of Pedialyte of 10 ml (2 tsp.) over an hour to see how she tolerates it. If she still vomits, then he wants to do an endoscopy survey tomorrow. Well, she stayed up til 3 AM this morning retching and vomiting. So we’re on for the endoscopy tomorrow as well as scan of her brain to see if anything weird is going on up there given her existing encephalopathy (brain injury, seizures, etc).

Plan for today:

1. Turn off the pedialyte – nothing by g-tube except Lamictal (since it doesn’t come in IV form )
2. Schedule PICC, MRI (if compatible with her titanium hips) or CT Scan, endoscopy + sigmoid colonoscopy
3. Wash her hair!! nasty, vomit-infused hair …

J’s vomit/bowel hospital stay - Day 7

Today we begin day 7 at Seattle Children’s Hospital. Jennah continues to retch and vomit when anything over 20 ml is administered through her g-tube. There were a few hours where we were dripping as much as 60 ml/hr (2 oz/hr) of the laxative in her without vomit, but that streak met a wet, messy, violent end.

An x-ray yesterday shows evidence of fecal impaction, but it hasn’t been confirmed by the GI team. Enemas have been ineffective. Oral/g-tube laxatives haven’t stayed in long enough to be effective.

We also started Jennah on IV parenteral nutrition (PN) since she has been without formula for nearly 2 weeks. This solution is custom formulated each morning based on blood draws. Unfortunately, the IV can only be used for maximum of 3 days before we risk vein damage and/or infection because IV veins are small, whereas the nutrients administered contain large molecules (i.e dextrose) and amino acids. Since we don’t anticipate that she will be able to consume any reasonable amount of nutrition through her g-tube any time soon, we will have to move on to a peripherally inserted central cathether (PICC), which essentially goes into a much bigger vein and leads directly to the heart. So that sucks since it’s obviously more invasive and therefore, more risk involved.

So here’s the plan for today:

1. perform a dye study – shoot a barium dye through the g-tube to confirm function of her gastro/digestive system, placement of g-tube, anatomical structure, and rule out further obstructions.
2. insert a PICC – requires a sterile field and mild sedation.
3. insert a new IV – J just pulled her old one out during a retching episode seconds ago … nice.
4. meds – normal anti-seizure meds (Lamatrogine, Phenobarbital), Famotidine (Pepcid – acid reflux), and Zofran (anti-nausea)
5. try giving some Pedialyte through the g-tube, just to see what happens.
6. consult with GI team