I just sat down in the Delta Lounge, that in and of itself demonstrates the bizarre factor of life moving on so quickly, awaiting my flights home. 

My sister Melissa (Missy) (Bartnick, Carlile) Wettstein passed away Wednesday, February 8th at 4:00 PM at St. Francis Bartlett Hospital after a difficult 3 years (diagnosed) with Early Onset Frontal Lobe Dementia. She was 55 years old, a daughter of Jim and Marlene, a devoted wife to Nathan and Chad, a mother of 4 wonderful children - Taylor, Micaela, Seth and Logan, a sister to 2, a niece and aunt to so many, a cousin to triple that number, a friend to even more AND a grandma to Micaela’s little girl coming this June.

For this update, I would like to share the last 8 days with her family and friends. These events cannot include the emotions of us all, but gives the timeline of what happened. I know so many have been asking “How?” As I’m the type of person that wants information, I share the following with you if you’d like to read on. 

NOTE: Not all notes are easy to hear.

Thursday, Feb 2:

Mis choked on a meatball at dinner at her facilty. Shoved the whole thing in. She had been having trouble with:

1 - understanding HOW to eat - the literal process of it. Cut, put in mouth, chew, swallow, repeat

2 - chewing and swallowing safely

The team at Quail Ridge (All Angels on Earth) gave her the Heimlich, CPR - she continued to cough it up and re-inhale it. She lost her pulse on the floor that night and was brought back by the staff. I am so grateful they didn’t give up on her as we were able to get there and see her. She was transported to St. Francis ER where they put her on a ventilator and sedated her. Toni (QR) stayed with Melissa through the scans and procedures. 

Friday, Feb 3:

No Changes - she stayed sedated and on the vent with a feeding tube. From my work trip in Chicago, I was staying abreast of the information and signs were pointing to a positive outcome. The ventilator was helping her at 30% at that time and to me that sounded pretty good.

Saturday, Feb 4:

They attempted to wean her off the ventilator and to do this they have to bring her out of sedation but she became too agitated and they decided to try the next day.

Sunday, Feb 5:

She was brought out of sedation and taken off the ventilator successfully. My calls that day mentioned she was going to be moving to the step down floor and out of the ICU.

Monday, Feb 6:

I landed at 10am hoping to see her on the step down floor. Right before I arrived, she had dropped to pulse ox 40% and was put on an aerosol oxygen mask and was not able to leave the ICU. I got caught up with the doctors and nurses to determine plan options. She had pneumonia from either/both the aspirated meatball and/or the ventilator, her breaths had a rattle sound. She was alert when I arrived, looked at me with awareness, reached for and held my hands. Along with visitors from Quail Ridge who LOVE HER, I stood by her bed for 12 hours. Her family and friends were checking in non stop and she was already surrounded by so much love. During this time, Chad brought Logan to say goodbye to his mom. It was so very nice to see Logan, get 3 good hugs from him and catch up on his world. It was also heartbreaking that he’s losing his mom so young.

In the early evening, the oxygen mask stopped being effective and she dropped to 70%. At that time, her desperation was apparent and the doctor (a saint) held me up as we decided to put her on a BiPAP machine to keep her alive until Taylor (her oldest from Florida) arrived. She did NOT like the BiPAP. We had to hold her hands down from trying to pull it off. They tell me she would have passed that evening if not for the decision and I found it very important for Taylor to be able to get there.  I slept on the chair awaiting hourly updates.

Tuesday, Feb 7:

Taylor arrived at 1230am and got to see his mom right away. Nathan arrived at 330am - Missy was still on the BiPAP machine until noon. Blake arrived at 1230pm. When I decided to remove the BiPAP machine (which meant she would breathe on her own or wouldn’t), it was the hardest decision anyone will ever have to make. While I took on the POA, I did not truly understand until that moment what I had taken on. We all sat bedside when they removed the BiPAP machine and replaced it with nostril O2 at 4ml. Surprising everyone, she was breathing on her own. She stayed at 98-100% for 2 hours, the doctor ordered a puree diet for her. Looking back, maybe this was the bump you hear of. 

Shortly after, she went into major distress - dropped to 70% and was squeezing my hands, her face reddish purplish, her eyes staring straight into mine. I called the boys back in to say goodbye again. We decided to give her anxiety and pain meds - she immediately relaxed and her numbers went back to 94-98%. We left to get some sleep assured she’d make it through the night.. 

Wednesday, Feb 8:

When we arrived to the hospital at 8am, she was mostly comfortable and on 6ml oxygen. We made the decision to let fate take its course and remove the oxygen while increasing the anxiety and pain medication. We spent the day listening to country for her and Deb Talan and Harry Styles for me.

We were moved out of the ICU and to the 3rd floor. At first when we removed the oxygen, she hung on, but quickly she dropped to 70,60,40,30%. In strange fashion, I turned down antibiotics and preventative ulcer meds during this time. It was a moment of being in the twilight zone. How strange to prepare for her to transition while also reasoning anitbiotics in the hospital setting. When I thought of how this was going to go these last few years, I imagined the quiet beep free hospice environment that we sat in for my mom. The passings were almost identical less the environment. Blake said his final goodbye about 2pm. At 4PM she left us with me, Taylor, Nathan and our hospice consult nurse around her. Her death was not graceful in my opinion, it was like watching something so full of life go empty. We prayed, held her hands and told her to go find mom. 

Thursday, Feb 9:

Today, I cleaned out her room at Quail Ridge. Those people are her family, I am so thankful for the love they showed her these last few years. When I walked into her room this morning, they had valentines covering the floor and her bed saying all the things they remember and love about Melissa. They made today ok, they are truly amazing.

Her HUGE life was oddly cleared today with 3 bags to goodwill, 2 bags of garbage, a box of art mailed to Micaela, a bag coming home with me and the rest donated back to the facility that was so good to her. 

Missy did have a huge life full of joy and love and travel and laughter. Her friends came out fiercely these last few years. I learned alot about her through them and I am very grateful. Our Bartnick family revisited the loss of our Marlene in similar ways, I learned the court system, the long term care system, end of life todos, and gained diamond elite status on Delta.  

We all have stories that support her condition starting much earlier than three years ago, but the story of her 'too young’ death starts at diagnosis in my mind. I have over 200 videos and journal entries cataloging her journey with FTD for when the time is right. I’ve spent the last 3 years searching and begging for REAL information and help with all of this and I only found it in sugar coated, “everyone is different” ways. I hope my journey can help the next person searching for what I needed, what we all needed these last few years. This update is from my perspective, in the place I happen to be in this evening. I do not speak for anyone else. 

Melissa will be cremated, a decision my family, Taylor, and Chad agreed on. Our families are planning a service and luncheon in Arlington Heights in a few weeks to give so many of us/you time to travel in if you’d like to. I will share the details in the next few days. 

If anyone would like to share photos or stories, please send them along to leslie@nolteacademy.com.

Thank you for all loving her.

Leslie