Day 28

Day 28

Sunday, May 28, 2017

Ann Saunders

RECENT Posts

  1. Day 31 (video in post)
    31 May, 2017
    Day 31 (video in post)
    Day 31 of Dan's ALS photo/video journey October 10, 2016 Condo Dan continued to succumb to the unrelenting grasp of the aspiration pneumonia and ALS. Despite all efforts of the antibiotics, airway and lung management, and mostly the tenacity of teamwork, Dan was unable to respond enough. Though knowing Dan would die from ALS, and his demise was determined a little over 2 years ago, there were still "things" that were unknown. I knew I had promised Dan I would try to make the final days as
  2. Day 30
    30 May, 2017
    Day 30
    Day 30 of Dan's ALS photo journey October 5, 2016 Condo Dan using his Triology Since Dan's birthday, the ability to swallow his saliva became more difficult. This was the result of the advanced weakened mouth, tongue and throat muscles. Everything intensified one night on October 5th at 3 a.m. Despite the efforts of using the Trilogy, Cough Assist, Smart Vest (chest percussion device used to clear the lungs of excess mucus), nebulizer (albuterol delivered via a saline mist to assist in
  3. Day 29
    29 May, 2017
    Day 29
    Day 29 of Dan's ALS photo journey September 26, 2016 Condo Birthdays have always been a big day to celebrate for Dan, Cory and I. However, the drastic contrast from last year's birthday to this year's birthday for Dan made celebrating bittersweet. It took on a whole new meaning as Dan was unable to blow out his candles and he enjoyed his cake blenderized through a feeding tube. How do you plan to celebrate someone's birthday knowing this will probably be their last? Dan's usual sparkle was
  4. Day 27
    27 May, 2017
    Day 27
    Day 27 of Dan's ALS photo journey August 22, 2016 ​ Condo  Dan had received his Medical Cannabis Card for Illinois shortly after his ALS diagnosis. Cory was his legal caregiver for purchasing with Dan (or without Dan) at the dispensary. There were different strains for different symptoms...some Dan smoked, some Dan vaporized and he also tried oils and edibles. According to many studies, in ALS as well as MS (multiple sclerosis), cannabis can act as an analgesic, muscle relaxant,
  5. Day 26
    26 May, 2017
    Day 26
    Day 26 of Dan's ALS photo journey June 28, 2016 University of Chicago Pulmonary Function Lab Dan and I met with his pulmonologist immediately proceeding his Pulmonary Function Test (PFT). In a presumably innocuous comment, she asked Dan if he had made a decision of whether or not he had planned to be artificially ventilated. When he answered he was not, she suggested he not continue with the PFTs. Dan's results were not good. They had fallen to below 40%. She suggested adjusting his Trilogy
  6. Day 25
    25 May, 2017
    Day 25
    Day 25 of Dan's ALS photo journey May 19, 2016 University of Chicago recovery room Having surgery with less than 50% lung function and no use of your extremities, makes for a tricky surgical procedure. The decision to have a PEG (percutaneous endoscopic gastrostomy) tube came when Dan began to have difficulty swallowing. A PEG tube is also known as a feeding tube. It is a tube which is passed through your mouth and exits through an incision in your abdominal wall. Dan often weighed his
  7. Day 24
    24 May, 2017
    Day 24
    Day 24 of Dan's ALS photo journey May 14, 2016 ALS Association Greater Chicago Chapter Walk While Dan acknowledged there would probably not be a cure or a treatment for ALS while he was alive, he would continue to be committed to raising awareness. He felt strongly about the need to raise funding for all those yet to be diagnosed and those living with it. He had already witnessed the tragedy and helplessness of ALS when my mom died and now he was living it. Up until this Walk, Dan had been
  8. Day 23
    23 May, 2017
    Day 23
    Day 23 of Dan's ALS photo journey May 10, 2016 Washington D.C. ALS Advocacy Day Dan and I had attended ALS Advocacy Day with the ALS Association's Greater Chicago Chapter the year prior. It was an amazing experience. We had inquired whether it be possible to join the "group" again this year. Our intent was to include Cory as this was such a powerful event and an opportunity for him to witness the political arena on Capitol Hill.  Within our group were 7 people all afflicted with ALS, and all
  9. Day 22
    22 May, 2017
    Day 22
    Day 22 of Dan's ALS photo journey May 2, 2016 Condo shower I couldn't believe Dan would smile after sliding out of his "Shower Buddy". It was so traumatic for me on so many levels. I was petrified he was injured; he only sustained a small laceration to the back of his head along with an abrasion to his side. I also felt responsible and mortified that I "let" this happen. Lastly, the reality of how I was going to get him off the floor and into his wheelchair caused me intense panic.