Day +59

80 days in the hospital today. Raul got platelets last night after I did my update as his level had fallen to 18 after his nosebleed. Today was a long day, with lots of people in and out of the room. Dialysis and school in the morning. With dialysis they pulled his weight down to about 18kg, which is around where we think is dry weight is now. He will have dialysis again tomorrow and get Sunday off.

Raul was somewhat out of it today, and was harder than usual to understand (which was not helped by the loud blow by oxygen!). They checked both a blood gas and an ammonia level, which were normal. He was awake more of the day today, but not acting like himself.

We had hoped that getting extra fluid off with dialysis would help his breathing, but unfortunately he was still working harder to breathe, so we put him back on high flow oxygen to get his lungs opened up more. He does seem to be breathing more comfortably, and he has been coughing well today to get some of the junk out. They also added another new antibiotic last night.

In the afternoon he had plasmapheresis. It was interesting to watch as they separated out his plasma from his blood and replaced it with donor plasma. The idea is that the donor plasma will have what his plasma is lacking. His ADAMTS13 level was less than 5% when they tested, which is quite low. The nurse told us that his plasma was darker than normal, which is to be expected with his diagnosis (the largest bag hanging in the photos is his plasma that was removed).

It will be several weeks before we get any more of the test results back. They wanted to do the plasma exchange now instead of waiting for the genetic testing results as we did not want to miss the window for it to be effective. They are also ordering the medication we may need as it can take some time to order. He will get plasmapheresis daily until his platelets rise and can be maintained better. 

 

 

In the below photo his plasma is the brown-ish liquid in the big bag next to the monitor