His doctor did come in this morning. We had a thorough discussion and made a plan of action. The chorea Philip is experiencing could be because of the levels of Vimpat in his body. However, it could be just due to the natural progression of NCL. Philip will stay in the hospital for the next couple of days (through Wednesday at least) to be observed as the Vimpat decreases in his system. If we do not see significant change, we turn to addressing this on a long term basis as part of the disease. Chorea is definitely not unexpected in the progression and can develop as quickly as a few weeks. For now, we are definitely making changes to medicine to observe its effects. They want to help him now but create a long-term plan for maintenance of the chorea. There are drugs that are used to address it and hopefully will lessen its severity. But there is the distinct possibililty that from now on he will have to live with it in some form. Over the next few days, they want to mimic his home routine with medicines and add medicines to see their effect in that situation. They also want to give us "as needed" options to help Philip sleep when it becomes overwhelming. To work that plan, they are removing his IV and all of his medicines will be given just as we would give them at home (dosages, timing, g-tube) and we might possibly move to a bigger room. Since we have seen some changes since yesterday we still hope that maybe a chronic condition was just intensified by Vimpat and we can correct the intensity by changing that medicine. The hospital doctor (who also works at the Children's Center with other NCL patients) has been immensely helpful and everyone has been specifically including us in the input and decision-making for his care. We've felt really confident in the wisdom and input the doctors have had so I believe your prayers for wisdom have been answered.
It seems that his respiratory virus just fell at a really unfortunate time but thankfully he seems to be recovering from it now. That has helped him to some degree. Today he has had enough response to really cough and we've been able to suction a lot of the secretrions at that time.