Help Ivey's Journey Through Brain Surgery

Ivey’s first 32 months!!

My amazing, sweet, smart, sassy girl has to have “brain” surgery!!

I put brain in quotes because he doesn't actually have to go all the way into her dura.

If you’ve been following Ivey’s updates, well, this is the one!

After her sleep study a few weeks ago, we had a follow-up appointment with Dr. Brahma. The sleep study was to determine if she had centralized sleep apnea. Well, she does. With the apnea and her inability to swallow properly, Dr. Brahma believes surgery is the best option to do now rather than wait until she is four.

Surgery is scheduled for August 27, 2025.

This has been a long journey, but it is almost over, I hope. Even though this will have a lifelong effect, the worst will soon be over.

We have been through so much in her short little life. I have had to advocate over and over again to get something done ever since she was two months old. I have brought up her behavior while eating and drinking since she was two months old, and we went to bottle feeding, and feeding her became so difficult. I used to say it was like feeding an alligator. It just kept getting brushed off as reflux. We started thickening bottles with oatmeal (per doctor's orders). After she came off a bottle, it became a little harder to do that. Every time she would drink anything, she would cough and cough. I pushed even harder to have something done. We were sent for a swallow study when she was 14 months old with a diagnosis of “mom suspects aspiration.” The results of that study showed I was correct. We started her on honey-thick liquid. Every visit after that, I asked about next steps. EVERY VISIT. At every visit, I was told we would talk about it next time, but that never happened. I felt like she was getting worse. I requested she be sent for a second swallow study when she was 26 months old. This study showed progression in the aspiration. I expressed my concerns about being shut down about next steps, and the wonderful and amazing speech pathologist who did her study helped me advocate for my child. For her, I will forever be grateful and could never repay her for what she has done and got rolling for my girl in the last 6 months. She set us up with Dr. B, who is an ENT at Children’s, and he really got this ball rolling. He did an in-office scope down her nose and saw some pretty nasty stuff. He wanted to have a closer and deeper look at her airways and had her go in for a scope under anesthesia. He found that everything from her mouth to her lungs looked anatomically correct, but her respiratory system was extremely inflamed. While under anesthesia, he also did an MRI. This MRI found the Chiari malformation. Thanks to Melissa Flemons for the neurosurgeon recommendation of Dr. Brahma. Since seeing him, we did the sleep study. And if you’ve read this far, you know what’s come from that.

Thank you to everyone who has checked on my girl during all of this. For everyone who has prayed for her.

The surgery she will be having is a Chiari decompression. He will be going in at the nape of her neck and removing a small portion of her skull to relieve the pressure on the cerebellum and spinal cord, allowing spinal fluid to flow freely.

She will stay in ICU one night, and general care another. Once home, he said she will be in a little pain for 7-10 days, and after that, she will want to be her normal sassy, full-of-life self, but I will need to keep her calm and easy-going for 3-4 weeks (pray for my sanity).

Any prayers and donations for medical bills that we already have and those to come are much appreciated.