Today was a long day indeed. Rafi had scopes inserted from above, below and in the middle today. GI looked at her digestive tract and told us that her insides looked very healthy. On a positive note, and this is according to him, there wasn’t any sign of EB damage in any of her GI tract. Plus, he didn’t see any overt signs of gvhd and he would be surprised if the biopsies came back as positive for it. So we got that going for us.

The pulmonologist also told us that he was very happy with what he saw in her chest as well. Problem is he only went down a little bit with the scope. This means we didn’t see the area of disease. We’ll see what the stains show tomorrow. Part of the procedure was flushing some saline solution into he lungs and then suctioning it out. The idea is for some diseased cells to get caught in the saline and then we can look at the cells and figure out an origin. The stains tell us if it is fungal, bacterial, etc. So far, we know it is not fungal.

We also switched her from a ventilator to an oscillator. The oscillator is better for her lungs because it uses less pressure to inflate and deflate the lung. This will lead to less lung damage (if any at all) over the long haul. A ventilator uses a greater amount of pressure to expand the lung. The oscillator can keep the lung expanded for greater periods of time without subjecting them to an excessive amount of pressure at each respiration. This has also helped her to expel more carbon dioxide than before as well. Her blood gas numbers and her general saturation numbers have been better as well. So we have a win on several levels.

She has been spiking some pretty big fevers today, with a high of 105.0. It’s really terrible to see her like this all the time. The next 48 hours will tell us a lot. Then again it may not tell us anything. That’s the thing with this. We may never know what caused her fevers and her pneumonia. We have a couple of the doctors thinking it is an aspiration pneumonia. Meaning, during one of her vomiting sessions, Rafi inhaled some of the vomit and it caused a chain reaction that led to this. There has also been another off the wall idea, toxic shock. Staph releases toxins into the blood, she has a ton of staph, always has, and it may have all caught up with her. Of course, both theories could be wrong.

I am literally falling asleep at the computer so it is time for me to bid you goodnight.

Until tomorrow………….