saturday 8/17/2013

8:00am Dr called this morning. They had to re-intubate Ava, which is kind of a disappointment. She wasn't breathing well enough on the CPAP. Her right lung is collapsed and the Dr. said that she probably is just weak from surgery and from being a NICU baby and isn't able to inflate that lobe on her own. He hopes that she will just be intubated for another day. 

  He also mentioned that she has rib anomalies and vertebral anomalies which I am a little frustrated that no one has mentioned to me until now. He said he'll show us on the x-ray. These anomalies are common in VACTERL babies and I don't know the implications of them yet.

3:00 pm: spoke with Dr. Buonaito (pronounced Bon-a-Uto, phonetically written here for my own benefit). Ava has been given some mucomist through the breathing tube to try and help break up some of the mucus in her lungs. She'll get another chest x-ray in the morning to see if the rigt lung looks better. Her feeds have been started. Breastmilk is given continuously through her NG tube, starting at 5mls an hour and going up by 2mls every 4 hours to a maximum of 19mls per hour. That will probably help her feel better. It looks like they want to keep the lines and drains in today because of her limitted IV access, in case she needs blood or something. I learned that the drains (chest tubes) are pulled after the pacer wires and atrial IV line because sometimes those can bleed a little, and the chest tube drains away that blood. He showed me the xrays of her ribs and spine. It looks like her ribs on the right are just a little close together, but not problematic. Her vertebre look like they developed fine but the spine as a whole is a little curved, so she potentially has a mild scoliosis. We'll go to specialists for this down the road, after we are done with all the life threatening issues. 

8:00pm: nurse "slammed" some meds down her NG (this is my take on it), including oral potassium. She almost immediately puked it up. I've been pretty angry since then. Why the HECK would you order oral meds all at once for a pt who essentially has an empty stomach, who has a history of puking up her multivitamins, who only has an NG NOT an NJ, and who has a strong history of aspirating. Even moreso, why the HECK would you give the meds so dang fast. IF we've determined that her little belly can only handle a fraction of a feed why do they think it can handle all that extra volume at once (anatomically- she also has a small stomach) It should have been diluted and given over a long length of time in the first place, ESPECIALLY for the first administratn. If this gives her aspiration pneumonia, I will be so angry. The doctor didn't cancel the oral med, but instead cut back on her breastmilk to 3cc per hour. After she puked, the nurse gave her a sponge bath and changed out her linens. It was obviously very painful for Ava. The look on her face was heartbreaking, as was the silent intubated cry. I don't know about you, but I pre-medicate ADULTS before rolling them around for a bed bath after surgery. I would expect the same for my baby with big fat chest tubes! I'm not a happy camper tonight, and can't wait to get back to the NICU where routines were predictable, breastmilk is preserved, and where the nurses are more invested in my baby.