Day +212

Raul has had a pretty hard week, but he enjoyed getting out in the sun this afternoon for some fresh air. He was very relaxed, even when we came back in. It has also been a week since he got agitated, which is great! And possibly the most exciting news is that he is finally weaned off his Fentanyl drip, which means he can be disconnected from his pole for most of the day! 

Unfortunately, medically things have been even more complicated. He currently has one respiratory virus, parainfluenza, which we checked for after a long night of coughing at the beginning of the week. He also has two viruses showing in his blood, both CMV and adenovirus. He started an antiviral for these last week, and his numbers were even higher this week, so we switched to a trial antiviral that they have had a lot of success with. He will get the new medication twice a week. 

His inflammatory markers this week were mostly stable. We had hoped to see them going down with the chemo, but we are still glad they are not going up. They wanted to try this med. for about three weeks, so we still have another week of it, and we increased the dose at the end of last week. We will meet Monday to discuss what to do if this chemo is not successful in treating the HLH. 

The pressure sore on Raul's head is one of his most concerning issues. It has worsened, so we are now trying vinegar soaks and applying Silvadene. This wound has a bacteria that is really only susceptible to one antibiotic, so it would be very dangerous for it to get into his bloodstream. If the wound continues to get deeper, this would become more likely. 

One of his other scarier issues is his gagging/choking. This week he has had several episodes where he has gagged and dropped his oxygen sats, or looked like he was choking, but thankfully he has not actually choked or turned blue. Sometimes he vomits a little, but it is usually more of a gag. Luckily these episodes are usually very quick, but they are still scary for him and us.