Well, we've been home just over a week (it's actually 1:40 a.m. Tuesday morning) and we're trying to find a routine. Andrea came home with oxygen, an apnea monitor and a pusleOx monitor. We've been managing with the equipment well enough, except that we average 20 to 30 "false alarms" on the apnea monitor every day, most of them in the middle of the night. Andrea sleeps about 4 hours at a clip, but I'm getting up every few minutes to deal with the monitor. We've been experimenting with the system, trying to find better places on her body to put the leads and adjusting the temperature in her room, and have made some progress. The problem is that we can't just turn off the machine, because there is always the fear that the next alarm will be a legitimate one. We see the pulmonologist on June 29, and maybe she can make some adjustments to the program.
On Monday morning, Mom and I had to take Andrea to Overlook Hospital for some blood work. Because she is on diuretics, her pediatrician wants to monitor her electrolytes. Additionally, since Andrea has a history of hemoglobin low enough to warrant transfusion, the doctor ordered a CBC to make sure her blood counts are adequate. I have to say, Andrea behaved like a trouper, and the phlebotomists were awesome! Even though Andrea is much bigger than she was, she still has tiny arms and even tinier veins. The phlebotomist got her vein on the first stick of the needle. Now, we have to wait for Wednesday when we go back to the pediatrician to see if all is OK with the blood. We'll probably have to repeat the process until Andrea is no longer on the diuretics.
Last Thursday, we had a visit from a visiting nurse. This experience has been surreal. Despite the fact that we have two children already, we endured a visit where we were instructed in such things as "don't shake the baby", and "always put her in a rear facing car seat in the car". Considering parents are sent home with newborn babies all the time, it was weird that we had to listen to all the "Parenting 101" details. Fortunately, I think she's only coming back one more time to do a weight check.
Have more to write, but I'm too tired. Will shoot for tomorrow.