Millie’s Journey: Struggling but Fighting with Strength and Hope.1993

It’s with a heavy heart that I share today’s update on our sweet Millie. Last night was an especially difficult one for her, as she endured an incredibly rough evening. Millie has been crying and throwing up consistently, struggling with a lot of pain that we could feel in every moment. As a parent, it’s devastating to see your child in such discomfort, unable to fully understand what is happening to her. We’re doing everything we can to comfort her, but the pain remains a constant challenge for both her and us.

To add to the weight of her struggle, Millie underwent an EEG last night, and the neuro team reported that the results came back normal. While this is somewhat reassuring, there’s still so much uncertainty. We were initially expecting Millie to have her heart catheter and MRI on Monday, but due to the discovery of pseudomonas bacteria, the team decided to delay the heart catheter procedure. The risk of infecting her heart with the bacteria was too great. However, the MRI will still proceed as planned, so we’re hopeful that the images will provide additional insight into what’s happening inside her body.

In addition to the news regarding her heart, Millie’s biopsy results came back with another concerning finding: she has Panniculitis, a bacteria formed by pseudomonas. This bacteria has contributed to the nodules covering Millie’s body, which has been a troubling symptom for her. The doctors are closely monitoring this, and while the diagnosis is unsettling, we are grateful for the clarity it brings in understanding what might be causing the visible signs of her condition.

The doctors also suspect that Millie may be experiencing ICU delirium, a common condition for children in critical care who have been through extensive procedures and trauma. To help her, the medical team will be starting her on a medication tonight to address the delirium and hopefully help her with the mental fog and confusion she has been experiencing. We know that neurologically, something isn’t quite right with Millie, but at this point, we are still unsure whether the issue is physical or mental. The team has also raised the possibility of encephalitis, an inflammation of the brain, which could explain some of Millie’s odd behaviors and her inability to speak.

In addition to these concerns, Millie’s heart function is currently at 63%, which is lower than what it should be. Doctors have also found fluid surrounding her heart, which adds another layer of complexity to her condition. Despite all of this, we are trying to hold onto hope and remain optimistic that with the right treatments and interventions, Millie will continue to improve.

We are incredibly grateful for the amazing medical team working around the clock to provide the best care for Millie. They are constantly making adjustments to her treatment plan, ensuring that every possible angle is being explored. As hard as it is to watch our daughter go through so much pain and uncertainty, we find comfort in knowing she is surrounded by people who care for her deeply and are doing everything they can to help.

To all of you who have been sending love, support, and prayers—thank you from the bottom of our hearts. Millie’s journey has been long, and we know that it’s far from over, but the support from our family, friends, and even strangers has been a beacon of light during some of our darkest moments. Your encouragement gives us strength, and your prayers lift us up when we need it most.

Please continue to keep Millie in your thoughts and prayers. She is still fighting every day, and as her family, we’re doing the same. We are hopeful that, with time, the right treatments, and all of your support, Millie will come through this and continue to make progress toward a full recovery.

Thank you for standing by us during this incredibly challenging time. We will keep you updated on her progress as we move forward on this journey. We are forever grateful for each and every one of you who has walked this path with us. Millie is a true warrior, and with your love and prayers, we believe she will continue to show the world just how strong and resilient she truly is. ❤️‍🩹