We have learned a lot, since, other than when Scarlett was born, we have neither one ever been hospitalized.
- Avoid getting admitted on Friday night. Hospitals are bunisness, too, as much as we might like to think otherwise. The regular staff is not available, so we dealt with one whole round of social workers, chaplains, etc. before the "real" team was in place.
- Earplugs are important. There are so many noises 24 hours a day - crying kids, alarms, chatty nurses, code blues, hospital-wide announcements.
- Plan for sleep. We got into a routine with our night nurse to plan when we would give meds, feed, change and check vitals so that we could fit in blocks of sleep.
- Breastfeeding mothers are considered part of the baby's health care (at least at LPCH) so I was provided with meals 3 times a day. This was a godsend financially (though we will pay for it in the end) and for sanity. The food was put in front of me, so I ate it. And it wasn't half bad.
- There is help for pretty much every need. We have already been informed of what kinds of emotional and financial support we might qualify for once we have a specific diagnosis. Money was a huge concern for us, and still is, but we know now that they won't be bankrupting us just yet. For instance, we will qualify for California Children's Services once we have paid 20% of our annual income in costs (and it shouldn't take too long to reach that point, as far as we can tell).
- Even as a team, doctors don't agree. We have two great specialists for Scarlett, and they both disagree as to what comes next. Surgeons are very matter-of-fact; Oncologists are more treatment-oriented. There are nurse practitioners who filter for them, since they aren't always great at talking to parents.
- Ask for crazy things and you might get them. We were told there was a couple who are doctors here who experienced a similar situation with their daughter a few years ago. We asked if we could talk to them, if they were willing and able. Our doctor asked them, and they agreed to meet us yesterday. I can't say how comforting it was to get a hug from a mommy who knew exactly how I felt. She is the only person I have met who knows how my heart aches, and how helpless I am right now; they also gave us really practical tips for how to manage our first days at home with Scarlett.
- Look around - you might know someone. We ended up finding people we knew or had connections to all over, and seeing a familiar face was great. A nurse in NICU is a friend from high school, and dropped by with goodies (Hi Jen!); one of nurses on the floor I recognized from school, and was married at my parent's church; a doctor in pre-op was a parent from the school I teach at.
We meet with the ocologists on Monday. Until then, we're going to try to go back to our regular life, as best we can. Christmas Eve with family, play with our dog, and loving on Scarlett.