Originally the Infectious Diseases specialist diagnosed Willem with Typhoidal Tularemia and ordered that he be put on antibiotics right away (he was off the antibiotics because it was determined that his illness was viral). He has a PICC in his arm where he is receiving proteins, lipids, vitamins, antibiotics, and albumin. He is on oxygen and has a catheter. He no longer has to get out of bed to urinate or have a movement.
He has been, and is currently "third spacing" which means that all of the fluid they're putting in to him is, through an osmotic imbalance, I believe, (leaking) into the cavity spaces around his organs and making breathing difficult and certain positions painful.
Willem's liver is enlarged and his enzyme and bilirubin levels are up. Willem had an ultrasound in the early hours of this morning on his neck, kidneys, liver, and his heart. There was some talk of having the hospital take over his breathing which means intubating and hooking him up to a breathing machine but, fortunately, that has not happened and will, hopefully, not happen.
Because of the gross inflammation of his intestines he is scheduled for a lower GI scope in the morning to include a biopsy. The doctors are hopeful that the biopsy will help them understand what is happening to him.
Overall, today, Willem is in good spirits and was alert enough to assemble his Lego Bionical.
Nurse just came in to inform me that Willem will be getting several xrays of his upper and lower abdomen to search for air in the free spaces.
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.
We are praying for you everyday.
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