Raul's HLH-related labs were checked this week and are heading in the right direction! His Ferritin is down from about 17k to about 13k. Triglycerides down from the 500s to 300s. And his Soluble IL2 is back within normal range! Now we are hoping to see his Hemoglobin and platelets rebound, as he is still needing many transfusions of those. He has not had a fever in almost a week!
Unfortunately, he has been needing dialysis daily since Saturday. We will be trying to find fluid somewhere that we can cut down on as far as his intake goes. Daily dialysis is not ideal, especially now that we are now getting closer to being discharged again! We will be having a meeting on Monday to go over plans for longer term care and plans for getting back to Boston. If he keeps doing well we should not have to stay inpatient for the full 8 weeks of initial HLH treatment.
Raul has been doing really well with sitting up lately; he has actually sat up most of the day the past couple days. He had a great week of school this week, too. This afternoon Raul was talking about wanting to throw snowballs, so tonight after dialysis we went outside for a couple minutes to see the snow! He ended up not wanting to touch it himself, but laughed about having snowballs thrown at his stroller!
Unfortunately, he has been needing dialysis daily since Saturday. We will be trying to find fluid somewhere that we can cut down on as far as his intake goes. Daily dialysis is not ideal, especially now that we are now getting closer to being discharged again! We will be having a meeting on Monday to go over plans for longer term care and plans for getting back to Boston. If he keeps doing well we should not have to stay inpatient for the full 8 weeks of initial HLH treatment.
Raul has been doing really well with sitting up lately; he has actually sat up most of the day the past couple days. He had a great week of school this week, too. This afternoon Raul was talking about wanting to throw snowballs, so tonight after dialysis we went outside for a couple minutes to see the snow! He ended up not wanting to touch it himself, but laughed about having snowballs thrown at his stroller!
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