Diagnosis: Epilepsy & Cerebral Palsy
15 weeks old and Catalina Bender is already facing more than most of us do in a lifetime. Catalina is currently in the Picu watched over by her mom Jacky and dad Jordan. The family does not currently have health insurance, so we are asking once again to open your hearts to help this local family.
Catalina was taken to the hospital on July 11, 2020 for vomiting and having multiple seizures. She is currently in the PICU on a ventilator to help her breath as she continues to seize while she is sleeping.
Here is a post from her mom Jacky: “Day 3 in intensive care. Catalina stopped having seizures yesterday and was taken off her ventilator. Last night she spiked a fever. This morning she had another seizure and was given medication to control it. We did an eeg to look at her brain activity and she is having sub clinical seizures, meaning she is seizing even when she's not showing it physically. She will be getting sedated and put on a ventilator again to breathe. We still don’t have answers to why this is happening. Thank you guys for being there for us. I don’t want to ask for help but idk what else to do since we don’t have insurance and this hospital stay is going to be horrible.”
Day 4 in PICU. No seizures since 10:30 last night. fever sometimes, temperature drops. Still all tests coming back as negative, meaning we have no clue what’s causing them. More tests for rare infections are being done. A genetic epilepsy test was done but won’t have the results for 4 weeks. Emotions are high, but things seem to be looking up. The next steps are to slowly start lowering the sedatives and seizure suppressing medications. EEG is still running. if they are able to get her off those meds without having any more seizures we will be able to take out the breathing tube again. I want to thank everyone for their help and overwhelming support throughout this ordeal. Family members dropping everything to help us, and to everyone posting the go fund me. Each night we spend here costs roughly $20k, without insurance. Thank you all for the prayers, messages, and positive thoughts sent our way! I can’t respond to everything right now, but know that we really appreciate it. We are very overwhelmed by the love everyone has shown us in these hard times
Day 5: Yesterday Catalina had two seizures and one today at 8 am. still no update as to what may be causing this, they’re trying to get her on the right dosage to stop them completely. We’re waiting on some more bacteria tests. So far all bacteria and COVID tests have come back negative. She has been able to maintain a steady temperature yesterday and today.
Day 7 PICU
Catalina is still having sub clinical seizures here and there. Very brief eeg spikes. Our neurologist says to look at it this way. In the immediate picture it’s frustrating and scary because she is still having them. But in the overall picture we are winning. She is going hours and hours without having any, and she is having them for shorter and less intense segments. Before they were much larger spikes for minutes on end and would happen every 10-15 minutes. She says we are going to try another medication and that we are going to try to start going down with the sedative at the same time. (Only subtracting .05 dosage at a time). Her vitals are all steady and we need to keep them that we before excavating her off the ventilator. Antibiotics are done and all tests have been confirmed negative. So no idea when we could be out of here, the y’all by all the doctors here has been “We’re not in a rush, we need to pinpoint dosages and medicines in comparison to the eeg before thinking about excavating or really anything else”. We cannot thank everyone enough for the continued support. We are completely overwhelmed by the army of friends family and doctors she has rooting for her.
PICU day 8
Catalina’s meds were brought down .05 around 5 pm last night. Within an hour she had another seizure, and a few more lasting about 30 seconds throughout the night. We requested a transfer to Phoenix Children’s Hospital due to the lack of answers or progression up to this point. Nothing against Banner’s staff, I think they followed procedure and did everything they could. Our doctors and neurologist agree that she needs a higher level of care. We will update everyone on the transfer when we know more details. Phoenix Children’s Hospital has a team of highly recommended epileptologists that people travel from around the US to see. We’re trying to stay positive, we need a medicine that will keep her from having these seizures and hopefully answers as to why.
Transport was successful she is all set up in Phoenix Children’s Hospital!
Catalina’s having all her blood work and cultures re-done. Picks and IV’s re-done. She was pretty cold throughout the night and they’re hoping it’s not from an infection caused by her neck line. She was having seizures until midnight, but none since. They have her medication set to 3x the dose of banner. They think they have them under control but will wait to make sure. Spoke with doctors and neurologists throughout the night and morning. The goal once seizures are controlled is to get her off the drip and to get her off the ventilator. They’re discussing a no sugar keto diet if nothing else works due to success in other cases but this can cause growing complications, so that’s a last case scenario. The care here has been much more attentive, and fast and definitely a higher caliber all around. They’re aiming to have control within 24-48 hours. Then it’s the process of lowering and taking her off everything else while monitoring. Very hopeful, but it’s definitely going to be quite some time spent here, maybe even weeks. After that we will get more mri’s/cat scans to try to pinpoint the causes while we wait on the genetic epilepsy test to get back.
Tomorrow will be the end of our third week in the hospital with Catalina. Everything was looking up until yesterday morning when they found irregularities taking over her entire brain on her new mri. Unfortunately we have zero answers all tests have come back negative they have completed 3 phases of testing and have no idea what will help her. They did another deep scan mri and were able to locate where the inflammation is coming from. The white matter of the brain is inflamed basically the brain cell insulation is swelling. They’re going to try some different treatments and lots more testing. Even testing on us for genetic inconsistencies to try to pinpoint anything to treat accordingly. EEG was done again yesterday and they said it doesn’t look like she has been having any seizures, but is at high risk for more. Unfortunately this means we will not be reducing anymore medications at this time and just keep them where they’re at now. This all is really hard on us and we have a lot of people asking about her and I can’t respond to much. Thanks for all your love and support she needs it more than ever right now. This is absolutely heartbreaking, she needs miracle healing 💔
Aug.1 - Catalina is okay today still no answers and the next phases of testing could take weeks to get back. We’re staying hopeful that the mri findings is just treatable swelling in her brain. Her sight, hearing and movements, and neurological stats are not coming back the way they were hoping so definitely beyond concerned but hoping it’s just a slow recovery process for her and that her new treatments will make big improvements
Dec. 15- As of today, Catalina is a happy baby. She loves to goo and smile. We are in the process of raising funds for a service dog for baby Caty. They have a beautiful golden doodle puppy Violet. Violet will begin her training to be able to detect seizures.
Feb. 26- Catalina is going into surgery today to get a G-tube. This is a permeant feeding tube that goes directly into her belly. She will no longer need to tube that goes through her nasal passage. She is making tons of progress with focusing, head control, and grasping.