It's been a whirlpool of medical life right now. Let me explain now that I have had time to gather my thoughts, emotions, & pep talks from some amazing ladies I'm blessed to have in my personal camp along with Starbucks.
Friday, these Batten Fighting Siblings had their 120th brain infusion.
-Maleea had been battling a fever since the day after graduation, we suspected maybe around to many people, she also end up having a bad reaction to medication the same day, the entire week she laid in bed (beside horse therapy eval)
Saturday morning Malachi has a very specialized MRI to determine if his brain verticals are getting smaller, due to the increasing brain inflammation/pain he's been experiencing & determine if he has hydrocephalus in his brain or fluid buld up. Look at our blog for more details & what will happen next once we get results.
- Maleea while in her brain infusion her blood pressure dropped rapidly and the team quickly realized she need IV fluids. She seemed ok, but we knew she had stopped eating and drinking her normal self.
-Saturday morning Maleea began vomiting just as I returned home with Malachi
Then explosive diarrhea everywhere uncontrollable that evening, but I continued to manage her pain with a variety of med (I am a pharmacy these days)
-I reached out to on call team, and there suggestions didn't sit well in my soul, I knew something was very wrong.. this was NOT typical of a post brain infusion.
-Sunday morning Maleea begged for help / and wanted the pain to stop, I knew my instincts were take her to the ER not mask it with more zofran & Ibuprofen as suggested. My husband and & I tag teamed in grabbing things as he carried her to the car. (I should learn by now that having a hospital grab bag should always be on standby it is for Infusion, but not emergency)

The ER was fantastic, recognizing right away the complexity of Maleea history & Batten's Disease, ran every test, cultures, IV's even test due to her touch a horse, we had to go step by step details of what was different about her 7 days with this fever and if this was a bacteria infection happening.
I am so grateful they also decided (after suggesting) an ultrasound of her ovaries, stomach, and appendix, and then possibly the brain.
Sure enough, her Appendix was inflamed and larger than normal, the entire TEAM was in shock as they truly didn't expect that finding, but they believe now due to her possible high tolerance to pain and what she's endured already in her 18 years of multiple chronic conditions, pains, surgeries etc she managed this the whole time.
Emergency surgery was going to happen that night as the new concern was the infection in the appendix could have leaked into her abdominal Telling a medically fragile kiddo she's going to have surgery is tough, it breaks her down everytime. Surgery is extremely hard on Maleea, and with Batten's going under Anastasia & having surgery can cause a host of issues once out. Sure enough, Maleea's leg tremors are worse, walking gait is off. She is in a ton of pain, and will need pain management care every 3 hours for a while.
Reiff arrived just in time but had to leave soon after surgery to take care of Malachi and his medical needs /medications.
Maleea recovery from this is 4 weeks, as they were able to go in via the belly button which is also thru the abdominal wall. Abdominal surgery has been the worst for both of our kids in terms of pain and recovery. We are asking for help (getting vulnerable here) as being state caregivers to our kids, once they are inpatient, all pay stops. It's bzzare right...I have no words and didn't know this until a short few months ago.
This kind of set back is huge for us, this will cause us unable to pay rent in full, basic needs, let alone manage the situation we are in & proper care. Having a medical care fund helps families draw from that during these moments. It was vital when we were even first diagnosed.
 Blog ***** https://www.caringbridge.org/visit/castillotefamily/journal***** so I can update everyone all at once. It's the absolute worst feeling to keep asking for help—it truly is.
Most of all, continued prayers.
Sabrina & Reiff