We had hoped that on the day celebrating the country's independence we would also be celebrating Josephine's release from the tangle of hoses and tubes that have been so persistently present over the past many weeks. Unfortunately, there was once again a different path that we were intended to follow.
The week began in a mostly positive way. Josephine's creatinin level (which provides an indication of kidney function) had fallen to a personal best. Her lungs, while still a bit hazy on x-rays, continued to do well, and although her ET tube culture showed signs of bacterial colonization (Staphylococcus Aureus, not MRSA thank goodness), she showed no signs of infection. All was good until mid-week. On Wednesday - one day prior to our anticipated date of extubation - Josephine began showing a marked increase in agitation. Our normally sweet little girl turned into a head whipping, body thrashing, out-of-control stranger. From seemingly peaceful slumber, she would wake for no apparent reason, scrunch her face in agony and writhe in pain. By afternoon, it was obvious her episodes were more than just typical baby fits. After meeting with the doctors and discussing her changes in behavior as compared to changes in treatment, it was hypothesized that a new oil being added to her formula was causing gastro-intestinal distress. In short, she had a massive case of extremely painful (and very noisy) gas. Over the next day, they discontinued her feeds and transitioned back to the old formula, sans MCT oil. Although it took a day for the oil to move out of her system, Josephine slowly but surely began to have fewer fits.
Breathing trials started back up on Thursday evening, however, because Josephine had expended so much energy dealing with her tummy troubles, she was noticeably more tired and weak. As a result, the trials didn't go as well as hoped and extubation was postponed...again.
As I type, we're about 1 hour in on another breathing trial and Josephine is doing well. She has two additional trials scheduled for this evening, and if all goes well will transition to a lower level of support for at least four additional trials tomorrow. Depending on how she does, later this week we may be able to hear her cry for the first time since surgery - nearly 40 days ago.
Is it wrong for a mother to want so badly to hear her child cry? Because I do. I want to hear her cry and see her face without a gigantic mass of tape and finally be able to hold her in my arms to comfort her through this journey.
Tomorrow is another day...hoping it brings us a step closer to Josephine's independence day.
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