Saturday Nov 8th-Update & the power of recognizing a voices vs seeing...
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Castillote family
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Castillote family
UPDATE ON MALACHI ❤️🩹
Today has been a whirlwind of doctors and medical teams— including Infectious Disease—coming in and out, meeting with us and forming a plan.
Last night was incredibly rough for Reiff & Malachi. His pain level was above a 15, and when his pain goes that high, his heart rate spikes, his blood pressure rises, and he becomes understandably beyond reason—irritated, uncomfortable, and exhausted
Todays victory:
After working with us closely, the team finally found the right combination, dosage, and timing of medications to get his pain under control. His pain is now manageable. That is a WIN we are holding onto.
We now know that Malachi’s infection is in his brain fluid, chest, and bloodstream.
This combination is dangerous. He’s currently on three different antibiotics, each targeting different areas until cultures finish growing and we DON'T KNOW exactly what type of infection we’re dealing with. This process takes a few days, but the team is attacking it aggressively and urgently.
There were moments of light today…
Malachi lit up—smiled—for about 20 seconds when his beautiful Auntie Leanne and Uncle Ben came. They understand this medical life and the weight of all of this without a single word needing to be spoken.
My parents also drove from Olympia to be with him and support us. We feel deeply loved
Then things shifted—
Maleea suddenly started vomiting in Malachi’s room. We’re now monitoring her closely as we try to figure out if it’s food poisoning, anxiety, or related to her recent brain infusion. One kid fighting for his life & stability, the other suddenly sick… it’s a lot. Reiff is giggling the tough stuff.
A huge thank you to the Cruz Family for driving 3.5 hours to bring medical supplies, medical food for Malachi, and extra meds for Maleea. We are surrounded by love in motion.
next steps:
Malachi will be receiving a PICC line, which will allow long-term antibiotic administration into his bloodstream. We do know we will be here for several weeks, unless things change drastically, sadly Malachi learned today all his ports are gone. He's still trying to process whats happened & happening
One day at a time, logistics/ help/support/etc is being put together....I just need some time
One hour at a time, if needed
Today has been a whirlwind of doctors and medical teams— including Infectious Disease—coming in and out, meeting with us and forming a plan.
Last night was incredibly rough for Reiff & Malachi. His pain level was above a 15, and when his pain goes that high, his heart rate spikes, his blood pressure rises, and he becomes understandably beyond reason—irritated, uncomfortable, and exhausted
Todays victory:
After working with us closely, the team finally found the right combination, dosage, and timing of medications to get his pain under control. His pain is now manageable. That is a WIN we are holding onto.
We now know that Malachi’s infection is in his brain fluid, chest, and bloodstream.
This combination is dangerous. He’s currently on three different antibiotics, each targeting different areas until cultures finish growing and we DON'T KNOW exactly what type of infection we’re dealing with. This process takes a few days, but the team is attacking it aggressively and urgently.
There were moments of light today…
Malachi lit up—smiled—for about 20 seconds when his beautiful Auntie Leanne and Uncle Ben came. They understand this medical life and the weight of all of this without a single word needing to be spoken.
My parents also drove from Olympia to be with him and support us. We feel deeply loved
Then things shifted—
Maleea suddenly started vomiting in Malachi’s room. We’re now monitoring her closely as we try to figure out if it’s food poisoning, anxiety, or related to her recent brain infusion. One kid fighting for his life & stability, the other suddenly sick… it’s a lot. Reiff is giggling the tough stuff.
A huge thank you to the Cruz Family for driving 3.5 hours to bring medical supplies, medical food for Malachi, and extra meds for Maleea. We are surrounded by love in motion.
next steps:
Malachi will be receiving a PICC line, which will allow long-term antibiotic administration into his bloodstream. We do know we will be here for several weeks, unless things change drastically, sadly Malachi learned today all his ports are gone. He's still trying to process whats happened & happening
One day at a time, logistics/ help/support/etc is being put together....I just need some time
One hour at a time, if needed
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