Thursday, October 19, 2006

All systems..... Hold

Throw away the calendar should be a rule of having an short gut baby. (correction: baby with short gut)

Ellie's medical issues took an interesting turn this week. I think that she was bored with her old group of specialists and wanted to diversify her audience to include an entire other department, in this case Nephrology, or the kidney folks.

The short version goes something like this-

Ellie has been on a rotating treatment of two antibiotics and one anti yeast medicine to knock down the amount of bugs that she has growing in her gut. Two weeks of an antibiotic called Gentamycin, two weeks of Vancomycin, and then a week of amphi-terrible to kill the yeast. Rinse repeat, avoid a carpet of bugs in her small bowel and lower the risk of having one of those bugs jump across her gut to her blood stream where it could get to her central IV line.

Unfortunately the gentomycin crossed the line and entered her blood stream a few weeks ago and has been lingering in her blood, not a good thing since 'Gent' can cause injure the kidney and has nasty side effects in some patients if it is in the blood like deafness and hearing loss.

To make this more interesting is the fact that the level of creatinine in her blood has risen in the past week or so, indicating that her kidney function is not as good as it should be, which could be caused by the drugs affecting her kidneys or by something as simple as a low dose of dehydration.

Yes, dehydration happens even with all of the IV fluids that Ellie gets. She loses some fluid through her G-tube every day that is replaced by a simple formula that can be ineffective for some kids.

So we got to meet the very nice nephrologist (Oh, my old man's a pediatric nephrologist....)this week and the nephrology team has beenpaying daily visits to Ellie to check on her progress and make sure that things are moving in the right direction.

It looks like we are moving along but until things are sorted out, we are on hold.

Again, in the meantime she is happy as can be, has learned to wave to the nurses and doctors as they leave and is quite happy sitting up and watching the world in addition to standing and dancing.

No surgery tomorrow, but it looks like it could be on the horizon as soon as we get her kidneys sorted out. If we can't cycle her through the three drugs, we need to keep things moving through her small bowel faster and that most likely means an ostomy or stoma to open up the works.

1 comment:

Barbara Krause said...

Hey there, Gib, Abby, and Ellie,

I've been a slug about keeping in touch lately - lots of reasonable explanations, I suppose, but it all seems to pale in comparison to what you have on your plates so I won't bore you with the details. Please just know that you're never far from my thoughts and that pink has long since become my favorite color.

Love and hugs,