Bumps in the Road of Recovery

It’s been quite the week. Generally speaking, Charlotte is recovering well from her surgery—she’s been weaned off of her heart-related drugs (dopamine and dobutamine, for those of you who want deep details) and is still on a steady dose of milronone (lung-related). She was weaned off of pain meds (morphine and verset, an amnesiac sedative) relatively quickly as well. She’s had the Foley catheter and chest tubes removed and the surgical bandage taken off of her incision. She’s been transitioned from IV nutrition to breast milk via the NG tube.

However, she’s having a hard time getting off of the ventilator. We seem to be on a 3 steps forward-2 steps back path on that front. They’ve weaned her nearly off at least twice. What that means is that they lower the respirator settings so that Charlotte is doing the majority of the breathing, but the machine assists. In both instances, she did well at first, so they kept dropping the levels. At the lowest level they’ve gotten to (12 breaths/minute), Charlotte began to get agitated whenever she woke up. Two nights in a row they had to raise the levels back up and sedate her heavily. She’s a bit feisty and tries to tug on the ventilator (who wouldn’t want that thing out, anyway?).

Last night we hit 3 steps forward and 4 steps back—Charlotte became agitated enough that they had to set the respirator settings such that it is doing all of the breathing and she is being heavily sedated at even the slightest indication of wakefulness. Blood gas test from last night came back with some concerning indicators. Her chest x-ray this morning showed cloudiness in the lungs. Fortunately, an echocardiogram did not indicate any cardiovascular reason for her discomfort. Her white blood cell count was slightly elevated, indicating a possible infection. The doctors took cultures from her ventilator, blood, and slight seepage from the incision (something new today). We’ll have lab results and an official echo reading tomorrow. In the meantime, the doctors have started her on broad spectrum antibiotics to fight infection and have raised her Lasix dosage (diuretic to help drain the lungs). We spent some time with her today and she looks pink and peaceful as ever, despite this setback.

The attending told Philippe this morning that this is “bump in the road,” and everyone keeps telling us that getting kids of ventilators is not a science. It takes trial and error and the kid/patient drives the process. They do want to challenge the patient as early as possible to keep the lung muscles working and progress as quickly as is prudent, but these setbacks are unavoidable.

The nurses continue to be terrifically supportive and Charlotte’s surgeon was present for rounds this morning, which I think comforted Philippe a bit.

I can honestly say that this has been the hardest day since the surgery—there is nothing we can do for Charlotte. Being at the hospital is difficult, yet being away from her is equally difficult. Philippe is pulling double-duty, taking care of me, Charlotte and also working. He’s truly my hero these days.