Day 33 - September 15, 2014
Today I have the first of a few long conversations with LoLa's doctor about the discharge plan. He reviews a lot of information and a few possible scenarios. His main objective for discharging LoLa ASAP is based on the potential for her to acquire a secondary infection from hanging around the hospital longer than is absolutely necessary. Her remaining medical conditions can be reasonably managed at home with some supportive interventions, including medication and medical equipment.
The most likely outcome at this point is that LoLa will be discharged with an apnea monitor. This is a device that is connected to her body 24 hours a day via electrodes on her chest similar to those she currently dons which monitor her heart and respiration rates. This device has parameters that trigger an alarm to sound should those vital signs travel outside of parameters. It is basically a portable version of the setup she has currently. The medication they are discussing discharging her with is caffeine, which she was previously weaned off of. The doctor is considering adding it back in to help decrease the instances of apneic events.
Other discharge scenarios discussed are the window of time that one of the nurses had alluded to wherein if she doesn't have any episodes in that period of time she can be safely discharged without monitoring. Yet another scenario is a battery of tests that will indicate what kind of risk she's at for certain adverse events. I listen to all of the suppositions and when he asks my thoughts, I express to the doctor my knee-jerk opposition to the idea of an apnea monitor at home. He acknowledges that this all can be very scary. He reassures me that he can understand how if discharge at this moment necessitates a machine to alert us if her heart rate drops or she stops breathing, then it would seem that it may be safer for her to stay in the NICU. But he feels strongly that she'd be safer at home with vigilant protection from germs and exposure, especially with cold and flu season approaching.
He said the monitor, while imposing and cumbersome and scary, would be there to prevent a catastrophic outcome: crib death. Because those are words you want to hear before 10 am. He said that whatever the discharge plan is, we have to be comfortable with it. Because when she comes home, it's up to us to make a very difficult determination. He said if she were to have a "blue spell," or a significant apnea episode that she had difficulty recovering from or that made us (or her pediatrician) really concerned, that it's not just a trip to the ER. They can't just say, "Oh it's LoLa. We know her. Let's just take her back to the NICU." They would have to evaluate her from scratch, ruling out anything else that can cause this kind of thing in a newborn, one of them being meningitis. So she'd have to endure a lumbar puncture. While we understand we wouldn't be making these decisions on our own, it certainly weighs very heavy on us discussing all these potential outcomes. We struggle to absorb it all at once, and the doctor doesn't expect us to, offering to answer any and all questions as they arise and walk us through the process each step. I find myself wishing he could come home with us at the end of all of this to continue to reassure us and guide us...