Monday Night (November 26)

The hospital called tonight about 6:00. Dani Jo had a rough afternoon. She desatted several times and was just not herself tonight. They did two cultures to check for bacteria growth. They did some bloodwork to check for infection. They tested her for RSV. As of 9:30 tonight, all of the results had been negative. An x-ray revealed that she had some collapse in her left lung, so they put her on her right side so the left lung could expand and open up a bit. They switched her from her home ventilator to the hospital ventilator she was on before the trach surgery. (Amanda and I think this is a good thing.) The home ventilator will eventually be the right thing for her, but right now I think the other vent is best. The medical staff at the hospital is more familiar with the vent she is on now. Personally, I don't think they know enough about the home vent to know how to modify the settings accordingly. We hope to speak with Dr. Ruben (pulmonologist) tomorrow in hopes of getting him to be in charge of her ventilator settings. The past several days have been frustrating at times. Several members of her medical team seem to want to get her vent breaths per minute as low as possible (almost like they are trying to wean her off the vent--however, she will never be weaned off the vent because of CCHS). When they lower the bpm, she begins to desat. They then respond by jacking up her oxygen level of the vent. At times, it has been up above 60-70% recently. This is not recommended at all since there are damaging effects of too high levels of oxygen. They have said that they want her on one bpm rate for 12 hours during the day and another rate during the night. This would be great if she only slept during the night, but she's only 1.5 months old--she sleeps all throughout the day. She has really struggled remaining consistent and stable with the home vent the past week. These episodes occurring tonight have caused them to stop her feedings again. She has an IV and will get fluids that way for now.

She did test positive for Hirschsprung's Disease last week. We hope to have the surgery to remove the portion of her large intestine soon. We had hoped for so long that she would be home by Thanksgiving. Everything looked like that might happen for a while, but as the days pass and she continues to struggle with the home vent, we prepare ourselves for a longer stay at the hospital. I would like to say that home for Christmas is a realistic possibility, but I will hold off on saying that right now.

Teresa, thank you for everything you have done for our family and for Dani Jo. We love you so much for your sincere love and desire to take care of our little girl at the hospital. You are quickly becoming a part of our family. I have come to realize over the past two months that the medical profession is no different than any other profession. There are those that choose that line of work because they love what they do and they want to make a difference in the lives of the patients and families they deal with. There are also those that choose a career just to earn a paycheck. Unfortunately, we have had to deal with this as well lately. Teresa is definitely one that fits the first description.

Dr. Parsons, we miss you, so whenever you want to come back and take care of Dani Jo again, we will be waiting. Maybe that's what Dani Jo is waiting for. She didn't want to go home without you being there with her, so hurry up and come back. :-)

Well, that's all we really know right now. I am taking tomorrow off work to meet with the doctors. I hope to get in touch with Dr. Ruben tomorrow and ask for some expertise help from him. Please keep Dani Jo in your prayers. We love all of you.

Joey, Amanda, Jordan, Jamie, and Dani Jo