Tomorrow will be a bone marrow test and a dedicated line will be added to Willem to add medication that controls his blood pressure. Another doctor is now thinking HLH. You'll have to google it because I haven't even looked it up yet. I am wearing down and at my wits end. Still having trouble finding hope.
Thank you David and thank you Katie for your insight. I will now be researching mitochondrial disease and HLH.
Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.
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