Erin and I have requested surgical notes regarding the most recent surgeries and have been met with some opposition through delay and omission -- especially for the most recent surgery where Willem aspirated and his lung collapsed; causing him to go to ICU. We've requested the notes for our personal understanding and because it was recommended by a medical professional we respect. Not being able to acquire the most recent surgery notes is beginning to make us think that there is something to hide.
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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