Saturday, March 26, 2011

It's been a winding road

It's been several days since we posted and Aurelia endured ups and downs during that time. She got past her cold, and the flu, with relatively little fanfare. In the days since Jillian's last post her parents both stayed behind and watched over Aurelia's recovery with us until Wednesday. Jillian and I made a good transition once they left, balancing all these changes well and moving into the Ronald McDonald House here in Hershey.

What a lovely facility. The people there are very nice, the house is much less restrictive, and it is right across the street from the hospital. I feel very welcome there, and the house is in terrific shape. Just being this close to Aurelia has been a boon for our family, allowing one of us to sleep with Madison close by (on tempurpedic mattresses, no less), while the other keeps vigil with Aurelia. My work is only thirty to forty minutes away, allowing me to take only one or two days off here or there, so I don't have to burn sick days needed for Aurelia's anticipated second surgery, and being so close has made us much more comfortable confronting any deficiencies in Aurelia's care.

The hospital itself, with the exception of a few days in the middle of the week, has done a nice job caring for Aurelia. We've only encountered one or two bumbling/disengaged nurses, and after a particularly bad night a frank conversation with the attending increased communication between her care team and us as parents. The night in question saw Aurelia (who had been moved out to the general pediatric floor from their intermediate care unit) have her feeds not only delayed by hours, but wasted, spilled onto the floor by a nurse who had more concern for the online course she was taking than getting a feeding tube connected correctly. Add to this an increasingly difficult couple of hours where her need for deep suctioning (where they stick a tube down your nose into your lungs) increased so much that every thirty minutes nurses had to intervene to improve oxygen saturation rates, and what we had was a girl who needed 1 liter of oxygen just to maintain baseline oxygen levels.

We found ourselves in the intermediate care wing again, waiting in a little pod for a room, at 3:30 a.m., with our possessions (and a cot) scattered around us. With a fever spiking, Aurelia retching on phlegm, and my temper fuming, we couldn't even find an attending, let alone a resident. Needless to say, Jillian and I were more than slightly distressed. Jillian took over for me the next morning and did a great job straightening out the staff here, and ever since Aurelia's care has improved, even though the diagnosis worsened.

Aurelia has been diagnosed with pneumonia. The first twenty four hours did not go well. Antibiotics started late, the chest x-ray took hours to schedule, and we had serious concerns that the course of action to heal our baby girl had been derailed by poor attention to detail. After their conversation with Jillian, however, things turned around sharply. Aurelia has been on the mend since, her fever holding steady, the garbage in her lungs coming up with increasingly less invasive suctioning, and her mood improving drastically.

She's sleeping well, smiling, laughing, and doing great for a girl that has had a serious cold, flu, and now pneumonia over the last three to four weeks. We expect to be here several days yet, barring any set backs, and we'll keep you posted.

Thank you all for your prayers and good wishes - they mean the world to us!


  1. Glad to hear things seem to have taken a turn for the better. Continued good wishes and lots of love to the four of you.

  2. Keep hangin' in there Charlie. Your family has the strength of an army.