Annika is still inpatient. As of tonight she is still getting TPN and lipids although we have been able to go from “full” TPN to supplimenting her feeds. Briefly over the weekend we got her to full feeds but as of today we had to back the strength back down again. She just can’t do the full strength. Thursday she also got a dose of IV iron. We are trying to beef her up a little bit while we have a stable line to do so. She has been off IV antibiotics for about 5 days now. 

Tomorrow will be a big day. Annika will be having a bronchoscopy with biopsies. This is the rescheduled date from our 3 month one that had to be postponed. This one definately has me nervous. Lab work the past two weeks have showed concern for antibodies being made against her new lungs. The promisisng news is clinically she looks good. Her allosure labs are stable (showing no biomarkers of acute rejection). Today her pulmonary function tests were stable. Scary side- she had a dry cough, has had some exercise intolerace (but she has been in bed and she is anemic), labs show antibiodies are there. Biopsies are the final gold standard test. She will also have a scope with ENT due to voice hoarseness and constant throat clearing. She will also have a pH impedence study to test for reflux. Her old lungs showed chronic cholesterol plaques which are a sign of chronic aspiration; we don’t need to go that route.

Once all the tests are done the next steps will be planned. It could be as simple as more frequent lab work or as intense as a plasmapheresis and/or medications to suppress T and B cells. We also have to figure out nutrition. And if her reflux is bad that makes a whole new path for nutrition.

It has been a scary and trying 6 days. Asking for lots of healing prayers.