Update #6
In support of
Castillote family
View Support Registry
Castillote family
UPDATE on Malachi – Day 6
Here we are… day 6 almost behind us, and day 7 approaching fast. It has been another full day of nonstop morning meetings — touching base with Biochemical Genetics, Neurosurgery, the Nursing team, Infectious Disease, and all the doctors overseeing Malachi’s case. Even his Batten's team members came to see him, once they learned about his situation. They call him Mr. Famous around her, fitting cause he likes that, and brings a smile.
Today child life walked in with another squishy mellow 💕 & a beanie! It was even bigger and he lit right up.
Every team has been extremely helpful, but they’re also looking to me to help them understand Batten’s Disease better. There is so little data or research on older Batten’s kids, and we’ve now earned a new phrase around here: “Rare-Rare.”
I’m juggling a lot of moving parts right now. As Malachi’s POA, every medical decision comes through me. We continue to run into massive pain issues/nerve pain in his brain, and we’re still trying to find the right combination of medications. One of the drugs that helps his brain pain & all pain can also cause serious kidney damage — and the allowed time frame is only 3 days for a child, 5 for an adult.
The reality:
Malachi is fighting through meningitis (a brain infection), which brings extremely high fevers and unbearable head pain on top of removing a device thats been apart of his brain for 6 years… a chest infection… and bacteremia, which is a bloodstream infection. Bacteremia is always abnormal. While this is different from sepsis, we are working very hard to make sure he does not progress to that. The good news is that his organs are still doing well.
Last night he had continued waves of massive brain pain, which caused his body to misfire in different ways — delirium, hallucinations, and moments where he truly wasn’t himself. He is slowly improving, but the team has made it clear: he is not out of the woods yet.
Today OT attempted to have him sit in a chair — he managed 10 minutes, though in his mind it felt like two hours. We still have several major hurdles to get through:
• Clearing the infections through the weekend
• Re-assessment after labs and imaging
• Preparing for another brain surgery, another chest surgery, and a PICC line surgery at the same time is ideal, rather than putting him under multiple times, which is absolutely NOT good for our Batten's Fighters
• Recovery time
• And then the big question… can he restart brain infusions, or will this setback cause decline if he misses too many?
We’re also battling insurance for a new wheelchair fitted to his body long-term. Malachi has a habit — when he feels even a little better, he tries to do everything, and then pays for it with even more pain. We’re trying to protect him from that rebound, too.
We are doing everything we can to help him fight this and prevent any recurrence. One doctor told me today, “Sabrina… he was in really, really bad shape. It’s lucky you were already here for his infusion.”
A request Malachi has right now is beanies, as we will be headed into snow season for us & he hates looking in the mirror with his port, now its the scar of a 6yr old port site, and a new port on the other side of his head, and his entire head will need to be shaved. We would LOVE if anyone would like to send him a stylish beanie/ your logo whatever to our PO BOX, I think he would enjoy that suprise. In the comments let me know and we will send you the info!!
The outpouring of LOVE, prayers, shares, and messages has been incredible. We feel every bit of it — truly.
Thank you for continuing to share his story… and hey, tag a famous person or two while you’re at it 😉 jk!
Thank you all, again, for standing with us. 💙
Also, if your coming to THIS PAGE to spew your hate, unkindness or plain bullshit you WILL BE DELETED/BLOCKED aint got time for all that noise. It's rare to have two terminally ill kids in one family, we aren't extravagant, we are normal parents turn into caregivers and everything goes to them
#raredisease #feedingtubebaby #rarediseaseawareness #battenscln2 #formalachiandmaleea #medicallife #battensmom #NeedTheCure #battens #CLN2 #battensdieasecommunity
Here we are… day 6 almost behind us, and day 7 approaching fast. It has been another full day of nonstop morning meetings — touching base with Biochemical Genetics, Neurosurgery, the Nursing team, Infectious Disease, and all the doctors overseeing Malachi’s case. Even his Batten's team members came to see him, once they learned about his situation. They call him Mr. Famous around her, fitting cause he likes that, and brings a smile.
Today child life walked in with another squishy mellow 💕 & a beanie! It was even bigger and he lit right up.
Every team has been extremely helpful, but they’re also looking to me to help them understand Batten’s Disease better. There is so little data or research on older Batten’s kids, and we’ve now earned a new phrase around here: “Rare-Rare.”
I’m juggling a lot of moving parts right now. As Malachi’s POA, every medical decision comes through me. We continue to run into massive pain issues/nerve pain in his brain, and we’re still trying to find the right combination of medications. One of the drugs that helps his brain pain & all pain can also cause serious kidney damage — and the allowed time frame is only 3 days for a child, 5 for an adult.
The reality:
Malachi is fighting through meningitis (a brain infection), which brings extremely high fevers and unbearable head pain on top of removing a device thats been apart of his brain for 6 years… a chest infection… and bacteremia, which is a bloodstream infection. Bacteremia is always abnormal. While this is different from sepsis, we are working very hard to make sure he does not progress to that. The good news is that his organs are still doing well.
Last night he had continued waves of massive brain pain, which caused his body to misfire in different ways — delirium, hallucinations, and moments where he truly wasn’t himself. He is slowly improving, but the team has made it clear: he is not out of the woods yet.
Today OT attempted to have him sit in a chair — he managed 10 minutes, though in his mind it felt like two hours. We still have several major hurdles to get through:
• Clearing the infections through the weekend
• Re-assessment after labs and imaging
• Preparing for another brain surgery, another chest surgery, and a PICC line surgery at the same time is ideal, rather than putting him under multiple times, which is absolutely NOT good for our Batten's Fighters
• Recovery time
• And then the big question… can he restart brain infusions, or will this setback cause decline if he misses too many?
We’re also battling insurance for a new wheelchair fitted to his body long-term. Malachi has a habit — when he feels even a little better, he tries to do everything, and then pays for it with even more pain. We’re trying to protect him from that rebound, too.
We are doing everything we can to help him fight this and prevent any recurrence. One doctor told me today, “Sabrina… he was in really, really bad shape. It’s lucky you were already here for his infusion.”
A request Malachi has right now is beanies, as we will be headed into snow season for us & he hates looking in the mirror with his port, now its the scar of a 6yr old port site, and a new port on the other side of his head, and his entire head will need to be shaved. We would LOVE if anyone would like to send him a stylish beanie/ your logo whatever to our PO BOX, I think he would enjoy that suprise. In the comments let me know and we will send you the info!!
The outpouring of LOVE, prayers, shares, and messages has been incredible. We feel every bit of it — truly.
Thank you for continuing to share his story… and hey, tag a famous person or two while you’re at it 😉 jk!
Thank you all, again, for standing with us. 💙
Also, if your coming to THIS PAGE to spew your hate, unkindness or plain bullshit you WILL BE DELETED/BLOCKED aint got time for all that noise. It's rare to have two terminally ill kids in one family, we aren't extravagant, we are normal parents turn into caregivers and everything goes to them
#raredisease #feedingtubebaby #rarediseaseawareness #battenscln2 #formalachiandmaleea #medicallife #battensmom #NeedTheCure #battens #CLN2 #battensdieasecommunity
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