Day 18 and counting....
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Castillote family
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Castillote family
Day 18 in our “hotel hospital” 🏥 few update as things have shifted from this morning to now.
Malachi has made some incredible progress these past few days. We started slowly weaning him off the heavy narcotics on Friday, and over the weekend he handled the withdrawals like a champ. He’s smiling again, laughing at my terrible jokes and my baby-boy jokes, and—most importantly—he’s no longer in excruciating pain.
And the best news of all: Malachi is officially growing ZERO bacteria infections in his body!
Praise the Lawrdt!! 🙌🏽✨
We do have several moving parts ahead. The next big hurdle is getting his brain infusion, which keeps him on track with his baby sister.
TUESDAY the anticipated infusion day!!. If all goes well, he may finally be discharged to a nearby hotel for two days so we can monitor him closely for any post-infusion symptoms. OR he ends up staying a few more days inpatient for monitoring, those things are still being sorted out as he nears 20 days admitted (and by all means they atent in a rush to get him out), we will still have quick access to his inpatient/outpatient teams if anything changes. The biggest moving parts where insurance approvals & his Batten's team, and we had team members volunteering to come in on their day off to provide Malachi with his brain infusion bedside from the Batten's team .... Just WOW
Today was a full day—about ten amazing women from Malachi’s care team came together to advocate for him, review goals, double-check plans, and set the next steps. PT also worked with us to secure an interim wheelchair with tilt-back and full head support, since the powered chair he’s had for three years no longer fits his current needs. OT has been helping with supplies we’ll need at home since, as always, Reiff Castillote and I will be the primary caregivers.
On top of all that, I’ve spent time on calls with my caregiver union trying to navigate real-life questions: Will I lose my insurance? Will I still get paid after 20+ days out of work? Do I still meet the monthly hour requirements? These are the things people don’t see behind the scenes—but they’re real, and they’re heavy.
Thankfully, our social worker is helping us explore resources as well.
But one thing is for sure: We WILL get this boy home before December—God willing. ❤️
I’m ready for homemade coffee ☕️, to hug my bestie, to share quiet moments with my husband, to watch holiday shows with my baby girl (and all things BTS), and to snuggle our fur babies.
After almost losing Malachi a couple of weeks ago, we’re holding our family closer than ever. We still face Batten Disease head-on every day with our two Batten fighters—but we make room for joy too. 😉
We’ll have another update tomorrow—things change quickly, and Malachi’s body likes to keep everyone on their toes.
And… we may be adding a third caregiver to our little family soon. This process takes time, but my heart is already happy about who might be joining our wild, Batten-fighting train. 💛
Malachi has made some incredible progress these past few days. We started slowly weaning him off the heavy narcotics on Friday, and over the weekend he handled the withdrawals like a champ. He’s smiling again, laughing at my terrible jokes and my baby-boy jokes, and—most importantly—he’s no longer in excruciating pain.
And the best news of all: Malachi is officially growing ZERO bacteria infections in his body!
Praise the Lawrdt!! 🙌🏽✨
We do have several moving parts ahead. The next big hurdle is getting his brain infusion, which keeps him on track with his baby sister.
TUESDAY the anticipated infusion day!!. If all goes well, he may finally be discharged to a nearby hotel for two days so we can monitor him closely for any post-infusion symptoms. OR he ends up staying a few more days inpatient for monitoring, those things are still being sorted out as he nears 20 days admitted (and by all means they atent in a rush to get him out), we will still have quick access to his inpatient/outpatient teams if anything changes. The biggest moving parts where insurance approvals & his Batten's team, and we had team members volunteering to come in on their day off to provide Malachi with his brain infusion bedside from the Batten's team .... Just WOW
Today was a full day—about ten amazing women from Malachi’s care team came together to advocate for him, review goals, double-check plans, and set the next steps. PT also worked with us to secure an interim wheelchair with tilt-back and full head support, since the powered chair he’s had for three years no longer fits his current needs. OT has been helping with supplies we’ll need at home since, as always, Reiff Castillote and I will be the primary caregivers.
On top of all that, I’ve spent time on calls with my caregiver union trying to navigate real-life questions: Will I lose my insurance? Will I still get paid after 20+ days out of work? Do I still meet the monthly hour requirements? These are the things people don’t see behind the scenes—but they’re real, and they’re heavy.
Thankfully, our social worker is helping us explore resources as well.
But one thing is for sure: We WILL get this boy home before December—God willing. ❤️
I’m ready for homemade coffee ☕️, to hug my bestie, to share quiet moments with my husband, to watch holiday shows with my baby girl (and all things BTS), and to snuggle our fur babies.
After almost losing Malachi a couple of weeks ago, we’re holding our family closer than ever. We still face Batten Disease head-on every day with our two Batten fighters—but we make room for joy too. 😉
We’ll have another update tomorrow—things change quickly, and Malachi’s body likes to keep everyone on their toes.
And… we may be adding a third caregiver to our little family soon. This process takes time, but my heart is already happy about who might be joining our wild, Batten-fighting train. 💛
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