Continued Struggles

Day 58

Unfortunately Emma's struggles are continuing.  On Sunday, we spoke with the doctors and they were concerned that Emma was not responding to the antibiotics as they had expected her to.  While her bloodwork had shown some slight signs of improvement, they had not been able to wean her down on her high ventilator settings.  Her chest x-rays were also still showing the pneumonia in both lungs.  They took a sample of the secretions from her throat and sent those to be cultured.  The preliminary results did show that she had an infection in those secretions, but it should have been covered by the antibiotics she is already on. 

Last night however, her blood gases started getting worse and she was desaturating much worse.  Therefore, she was put onto a new ventilator to see if that would stabilize her - so she is now on a jet ventilator instead of the oscillator, but it is pretty similar and still provides a high frequency of "breaths" to keep her lungs constantly open.  It took awhile to get the right settings but eventually she settled down and was satting better, but she has been on 100% oxygen all day.  After all the changes she went through last night and this morning, her heart rate was very high and she was given a mild sedative to settle her down.  It seemed to help, but it was still worrisome to see her not acting like her normal self.  Later in the morning, the sedative started wearing off and she was getting back to being Emma and being active and alert.  As of tonight, she is continuing to desaturate and her settings had to be increased on the jet ventilator.  She is still unstable and needing exceedingly high levels of support.

What should have been a seven day course of antibiotics has been extended to ten days, and a new antibiotic has been added, along with some nebulizer treatments.  She had another echocardiogram this morning to see if that hole in her heart may have opened or if she had any signs of pulmonary hypertension - both of these were negative which we are happy about. 

Emma is still tolerating her feeds - she is at 8 mL/hour now, and is up to 1270 grams, which is 2 lbs, 13 oz.  She did have some fluid in her lungs and was looking puffy, so she was given some more Lasix to help flush out the fluids. 

We are hoping that the additional antibiotics and other treatments will start to help Emma, but she has a long way to go and is still very unstable.