UPDATE — Honest + Raw (because I don’t know how to sugarcoat this):
Things are moving fast and piling up harder than our brains can process. With Malachi now hospitalized and fighting for his life, our weekday world becomes a lineup of medical teams, care plans, meetings, and decisions. I’m trying to be everywhere at once — caring for Malachi in the hospital, caring for Maleea, making sure my husband is okay, and checking in on our middle kiddo as he processes everything happening. Saying Malachi is fighting for his life stungs so deep, not even a single tear can drop right now.

I learned today directly from his state social worker that because I am Malachi’s state-paid caregiver, the moment he is admitted, the state stops paying me, and pays the hospital,  they won't pay out to twice on 1 patient. 
Not reduced
Not paused.
Stops. Completely.
Their explanation?
“That’s just called being a mom while inpatient.”

Here’s the reality:
• My paid caregiving income ends immediately.
• Without it, we won’t be able to cover rent on one caregiver income.
• Rent is $2,500 (includes utilities).
• Gas + food on top of it… it’s overwhelming.
• We just purchased a new medical van, first payment is due in Dec $600
• We could use extra blankets 
• I’m exhausted from trying to fundraise alone. If someone feels led to take over sharing or managing it, I would be so grateful.
• Meal cards like DoorDash is great
•  Store giftcards- Costco, Trader Joes , and QFC/Safeway all are near by the hospital.
• Gas gift cards... Costco,  Circle K, Chevron,  Shell 

We still have a donation link:
• SupportNow.org (no fees) https://www.supportnow.org/castillote-family

Venmo - @Sabrina-Castillote 

If you’re not able to give financially, sharing helps more than you know, also actions helps, meaning we have dogs who need care thank you Cruz Fam Ariemi Cruz for managing our fury babies, we have laundry (thank you Kris Meyn grabbing ours from the hospital & washing it, the hospital laundry facility is absolutely disgusting & definitely a breading ground for bacteria after seeing it yesterday)
Thank you for holding us, praying for us, checking on us, and loving our family through the unthinkable.
We can't do this without incredible people in our lives & complete strangers sharing their journey. 

Other critical thoughts,  our son no longer has the hardware to get a brain infusion, and until he is clean/clear from this infection he can't get his life saving Brinuera treatment.  We have no clue what this will do to Malachi's progress as a Batten's patient,  or how much he will decline and how long before his next surgery is scheduled to get another brain port to chest port system. Not to mention the PICC line is another surgery on the plan but haven't been confirmed. This discussion hasnt include wheather Malachi will need Rehabilitation,  hes unstable currently. We have alot to think about, manage and process.

Having even the bare minimum a small relief of Dec rent, car payment taken off our plates can help us focus more on the next steps in planning Malachi care, while also managing Maleea's care as well.

Yesterday update next...........