I've donned my ruby slippers for weeks now, clicking them together frantically at every opportunity...so why aren't we home yet?
Just over a week ago, Josephine transferred out of the IMU to the cardiac unit on level 8 (known around the CICU as "the floor"). Since Michael and I have been working on the parent education requirements for quite some time, we thought our stay on the floor would be brief, really more of an exercise in patience than anything else.
As we were told in the IMU, life on the floor is very different. There are fewer nurses, so the expectation is that parents will pick up the slack and provide the majority of the care for their children. This was no problem. We'd been changing diapers, bathing, administering medications and changing out feeding pump bags for weeks. What was incredibly different was the number of doctors, nurses and miscellaneous bodies that paraded through the room each day. Nurse shift change report. Then medical rounds. Then another set of medical rounds. Then morning meds and feeds. And on and on from 7:00 a.m. until at least 5:30 in the evening, after which things quieted down somewhat. (Quiet being a relative term...there was an angry little baby down the hall - who we nicknamed "the ringleader" - who began screaming at precisely 6:30 each night. In short measure, he managed to get almost all of the other babies on the floor screaming in frenzied unison. We're proud to say Josephine selected her own screaming schedule very carefully, always screaming to the beat of her own drummer. Our little girl is no follower. :) ) Michael and I began the 48 hour room-in on Monday and were told that if everything went well, we'd be on our way home today.
Needless to say, the room-in went well for Michael and I. We were able to independently complete all of the tasks necessary for Josephine's care at home, including dropping a new ng tube (in case she accidentally pulled hers out...which she did three times over the course of our two day test.) We managed medications and feeds flawlessly. And by the time medical rounds made it to Josephine's room early this morning, we were declared good to go. We needed only to pick up Josephine's medications from the pharmacy, take her down to the clinic for a weigh-in and review discharge papers. We were ecstatic.
About 15 minutes later, everything came crashing in...
A bit of vomit and some bloody stool effectively canceled our departure and landed Josephine back in the CICU. After a full 48 hours of freedom from all wires, tubes and hoses (with the exception of her ng tube), Josephine has now regained an IV, all of her monitoring wires and a new stomach suction device. While most of the tests have been inconclusive or outright negative, the doctors are monitoring carefully for a condition called NEC - necrotizing enterocolitis. Best case scenario, we'll be here roughly another week sorting out her symptoms. Worst case scenario could mean another surgery and potentially not leaving the hospital at all until after Josephine's second heart surgery, which isn't supposed to take place until she's 4 - 6 months old. To say I'm disappointed is a massive understatement.
With all the drama, you'd think Josephine would look like a really sick baby. But she's holding up well. Her stats are all great, she has no markers for infection or inflammation and still manages to make some of the funniest faces in spite of the tape and tubes adhered to her face. She's really looking forward to going home...and we're hoping we can make that happen soon.
