Tuesday November 25th
In support of
Castillote family
View Support Registry
Castillote family
Day 19! TUESDAY November 25, 2025
Today has been rough on Malachi.
The morning didn't start well and we needed him stable before his brain infusion.
Malachi's, nausea, eye pain, underarm surgery site, collarbone, swelling, all over body tremors and surgery site on his head all came back with pain, after officially being off narcotic meds overnight, this was a sign for sure his body needed help, he was in distress when the entire team walk in at this moment, they knew he needed help as he started to hold his breath again to grit through the pain.
Meds were administered, pre-infusion meds were administered and once things calmed down, our Batten’s team by the way came in on their day off to get Malachi's infusion accomplished. The normal Batten’s team was onsite doing infusions for the Tuesday Families brain infusion day. (It truly brings me joy that it was our kids who made it possible for these other Batten’s fighting babies to get treatment here)
My anxiety could only allow me to not eat all day, and sleep right next to him......
#beingmommabear
#mom #battensmom
Infusion is completed! #158 He's doing okay but highly mediated again. We will see how he does through the night, and if the anticipated release date will still potentially be tomorrow to a nearby hotel for observation before we fully head home in a few days
Today has been rough on Malachi.
The morning didn't start well and we needed him stable before his brain infusion.
Malachi's, nausea, eye pain, underarm surgery site, collarbone, swelling, all over body tremors and surgery site on his head all came back with pain, after officially being off narcotic meds overnight, this was a sign for sure his body needed help, he was in distress when the entire team walk in at this moment, they knew he needed help as he started to hold his breath again to grit through the pain.
Meds were administered, pre-infusion meds were administered and once things calmed down, our Batten’s team by the way came in on their day off to get Malachi's infusion accomplished. The normal Batten’s team was onsite doing infusions for the Tuesday Families brain infusion day. (It truly brings me joy that it was our kids who made it possible for these other Batten’s fighting babies to get treatment here)
My anxiety could only allow me to not eat all day, and sleep right next to him......
#beingmommabear
#mom #battensmom
Infusion is completed! #158 He's doing okay but highly mediated again. We will see how he does through the night, and if the anticipated release date will still potentially be tomorrow to a nearby hotel for observation before we fully head home in a few days
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