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:
- 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.
- insert a PICC – requires a sterile field and mild sedation.
- insert a new IV – J just pulled her old one out during a retching episode seconds ago … nice.
- meds – normal anti-seizure meds (Lamatrogine, Phenobarbital), Famotidine (Pepcid – acid reflux), and Zofran (anti-nausea)
- try giving some Pedialyte through the g-tube, just to see what happens.
- consult with GI team