Help Ease the Burden for Madi's Loved Ones

A message from Peighton:

Our worst nightmare. We lost our sweet Madi.

So quickly, so unexpected. We took her to be admitted through the ER on Tuesday this week due to dehydration, after some appetite changes over the last month due to lots medication shifts. Aside from not wanting to eat, our healthy girl has been so happy and seemingly the healthiest she’s been in years (achieving planned weight loss, decrease in seizure activity, increased mobility). She was on an IV drip for fluids in the hospital while my mother and the doctors planned a g-tube insertion procedure. None of us worried. Everyone’s recommendations for g-tube were nothing but positive. And our girl is so resilient when it comes to any little procedure she’s had done.

She had the procedure on Thursday and it seems like it went great. She was happy the rest of the day. And beyond our expectations, our girl was moving around and even standing up taking steps without any pain medication following her surgery.

On Friday, Madi seemed very tired. We assumed from the surgery. She had her first tube feed at 10:00am. It was a lot of liquid and she looked to be very uncomfortable. She did not tolerate it well and vomited all of the formula. We think the sheer volume was just too high for her stomach, when she hadn’t really eaten a full meal in days. We knew there was a chance she may have aspirated a small amount of formula but she was sleeping harder and seemed more comfortable than she was before. Then she slept really hard. So hard her body was pretty limp and I started to hear gurgling noises in her breathing. A gurgly moan that concerned me so I called the nurse in. This was about 2:10pm. Her vitals were ok and the nurse said she just seemed to be sleeping very hard. My mother went to the cafeteria to grab some lunch while I stayed with my sister. A staff nurse came in to follow up with the tending nurse’s observations and an ICU nurse followed short behind to discuss Madi’s typical “sleeping” baseline. They attempted to wake her up but she was not responding. They tried a sternal rub and pressed on her fingernails to induce pain arousal. Nothing. She was breathing, she had a pulse, but her body was limp. The ICU nurse held her head while he assessed her ability to protect her airway. As he moved her head in different positions, my sister turned blue and her breathing stopped. She was under a full code by 2:30pm. As a team of 30-40 people rushed to my sister’s room the chaplain held my hand and prayed with me. My poor mother coming back holding her lunch to a crowded room of chaos after leaving a sleeping girl peacefully just moments before is an image branded into my brain forever. She was intubated immediately and rushed to the floor of the ICU where they hooked her up to an EEG and performed a CT scan, as the doctors believed that a seizure likely triggered something. My mom and I were very concerned at this point about aspiration. The CT scan revealed something so beyond our worst imagination. Madi’s brain was swelling, and it appeared to be herniating. They did an MRI. They told us the closest neurosurgeon is in Seattle at the University of Washington, and it would be possible that they would not take her case. They didn’t. Her MRI results confirmed everything we didn’t want. We were stuck. Our only option was to put her on a medication that could possibly stop the swelling. This medication was high risk and because of this she had to have a PICC line inserted from her arm to her heart so her veins wouldn’t collapse. This all happened within about 6 hours from her full code at 2:30pm. We stayed at the hospital through the night Friday, taking turns with her in the ICU. Family from all corners arrived at odd hours of the night to see our girl, as it may be the last moments we have with her. The ICU was so gracious, letting us break nearly every visitor rule they had. This proved to us the severity of her condition.

Saturday morning, the tending ICU and neuro docs came to see Madi and evaluate brain activity. There was none. Our sweet girl was brain dead in less than 48 hours of going into a simple surgery. What the F*** happened. We’re in shock and devastated.

They went through the MRI with us in the room and showed is the way her brain was being forced down through the only hole in the skull, compressing her brain stem. The swelling would have been caused by lack of oxygen. They also found that she had a condition where her skull appeared to be thickening on the front end. This would have been something that been happening long term. A contribution of both is what we think took our girl away.

So we had to decide. My mom and I did not want her to be on life support just for us. Our Madison wasn’t with us anymore. Her body was but our sweet girl was already dancing to her favorite music in a safer, more peaceful place. She was surrounded by a room full of people who loved her all day. We cried and cried and cried. We said goodbye to our sweet Madison girl at 6:30pm Saturday night.

May she be free from Rett now, and all of her frustrations. Happiness and peace only now. We can’t even believe it. Thank you to everyone for their support and love through the years. May God bless you all and our sweet angels.

Rest in the highest paradise, Madi. We love you forever. ☀️