Update #5
In support of
Castillote family
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Castillote family
Update #5 on Malachi
These last four days are starting to blur together, and we have two more weeks to go, but here we go…
Sunday night into Monday was brutal for Malachi.
He continued to vomit nonstop 🤢 and spiked a high fever. His pain level was so intense he couldn’t even speak. His face and head were visibly swollen.
I had been woken up at 3am as we tried cooling him down with wet cold washcloths. Again at 6 am i was startled awake with audible vomiting , I ran to Malachi with a vomit bag.
Multiple medical teams rotated in and out—assessing him, talking with me about next steps, asking what I was seeing, and sharing what they were seeing. Decisions were being made moment by moment in real time, which I loved the collaboration
A rapid IUC team was dispatched.
They are brought in as a second set of eyes—overseeing his current team and making recommendations without having to move him back to the critical care floor, vs the acute care floor now
They ordered a Transthoracic Echocardiogram and an Emergency CT scan to determine if he was experiencing hydrocephalus—swelling in the brain caused when fluid can’t drain properly. With the swelling in his face and head and the level of pain he was in, they needed answers fast.
Results will be in on Tuesday.
While all of this was happening, the team adjusted his treatment plan. After trying different options, we finally started to see a winning combination. His pain began to ease, and for the first time in a while, we saw small signs of relief.
But just as one hurdle softened, another appeared.
The nurses and I recognized 10hr with no urination.
Another concern.
Another alarm.
Another mountain.
The nurses were on it—watching every number, every output, advocating, problem-solving, doing everything we could to keep his body moving in the right direction.
Meanwhile, Maleea has been taking it easy. She’s been resting, sleeping, and staying close. Ideal for monitoring her too—and for keeping our little tribe together.
One day, one hour, sometimes one minute at a time.
Thank you for continuing to pray, check in, and hold our family up in this battle.
These last four days are starting to blur together, and we have two more weeks to go, but here we go…
Sunday night into Monday was brutal for Malachi.
He continued to vomit nonstop 🤢 and spiked a high fever. His pain level was so intense he couldn’t even speak. His face and head were visibly swollen.
I had been woken up at 3am as we tried cooling him down with wet cold washcloths. Again at 6 am i was startled awake with audible vomiting , I ran to Malachi with a vomit bag.
Multiple medical teams rotated in and out—assessing him, talking with me about next steps, asking what I was seeing, and sharing what they were seeing. Decisions were being made moment by moment in real time, which I loved the collaboration
A rapid IUC team was dispatched.
They are brought in as a second set of eyes—overseeing his current team and making recommendations without having to move him back to the critical care floor, vs the acute care floor now
They ordered a Transthoracic Echocardiogram and an Emergency CT scan to determine if he was experiencing hydrocephalus—swelling in the brain caused when fluid can’t drain properly. With the swelling in his face and head and the level of pain he was in, they needed answers fast.
Results will be in on Tuesday.
While all of this was happening, the team adjusted his treatment plan. After trying different options, we finally started to see a winning combination. His pain began to ease, and for the first time in a while, we saw small signs of relief.
But just as one hurdle softened, another appeared.
The nurses and I recognized 10hr with no urination.
Another concern.
Another alarm.
Another mountain.
The nurses were on it—watching every number, every output, advocating, problem-solving, doing everything we could to keep his body moving in the right direction.
Meanwhile, Maleea has been taking it easy. She’s been resting, sleeping, and staying close. Ideal for monitoring her too—and for keeping our little tribe together.
One day, one hour, sometimes one minute at a time.
Thank you for continuing to pray, check in, and hold our family up in this battle.
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