Day +90

Thankfully Raul's bilirubin is heading back down! It was 7.5 yesterday and 6.3 today. We aren't sure why it went back up or why it is now coming down, but I'm just glad it is coming down! Raul continues to just have 1-2 high fevers a day, and they come down easily with tylenol. This afternoon he had a fever that appears to have come down without even getting tylenol, which hasn't happened in ages! He is definitely feeling better without so many high fevers!

Raul's feeds are up to 55 ml/hr tonight, and his ultimate goal is 70 (though 60/65 could be okay). His TPN has been lowered for tonight, and should be stopped entirely tomorrow. Yesterday they lowered the calories but did not lower the fluids, so today his weight was crazy high since he is now getting over 1,000ml of formula a day too. His weight was up to 19.6 kg, and his dry weight has been 18kg. We are thinking his dry weight may have increased again a little, so we just pulled off 1kg today as he is scheduled for dialysis tomorrow too, and we will see how he does at that weight. In the past when he has gone above 18.6 he has had breathing problems, but amazingly had very few issues this time (breathing a bit fast, and needed a small amount of blow by oxygen briefly overnight). He was definitely puffy, though.

Raul was able to go two days without needing platelets, but was borderline today and got a nosebleed, so he will get them tonight. He had been doing well with fewer blood transfusions, but the past few days he has been very low. His hemoglobin was 6 Saturday when he got blood, then was only just over 7 yesterday morning so they tried to give blood but he spiked a fever so they had to stop it. Because he was only able to get a small amount before his fever, he had to get more today as he was back down to 6.3. Hopefully this time it will last longer!