Tuesday 8-20-13 8:30am — Ally hospital update

They think there is a chance that Ally might have a UTI (urinary track infection) since last weeks test were a bit off and they originally thought a contaminate, but now yesterday’s culture is growing gram negatives.  They started treating it with Cipro antibiotics yesterday.  Then her blood culture came back with possible staff infection.  If could also be a contaminant, so they are re-testing by drawing from her port and sticking her arm.  They are also going to start vancomycin, an IV antibiotic in case she does have staff/MRSA (since the results can take 1-4 days), but she’d probably be sicker if she had staff.  I don’t mind treating both though since we need to resolve her fevers and want to explore all areas. We are the last case for ENT, and they are going do a broncoscopy to check her trach size and get out an extra mucus she may have.  I did have to advocate for them not to stop her feeds 6 hours (or more) before since SMA kids cannot tolerate more than 4 hours without food and they have been receptive.  Still unclear what time she will go in for this procedure and if and when they will stop her foods.  She has a J tube so her food is not in her stomach, but her jejunum which is why they will partially accommodate my request. It is also too late to order TPN which would be IV nutrition.  After the bronc, THEN, we will switch to her home vent (the Trilogy) to find the right pressures for home. We will need to be on that at the hospital at least overnight, but possibly longer.  Lots of stuff, but I am happy with the progress.

Thank you again for the prayers and well wishes 🙂