Updated: Apr 26, 2022
On Saturday, February 5, 2022, my 52-year-old brother, Joaquin, (who experiences autism and doesn't always have reliable communication access), fell down in the shower and landed on a raised lip that divides the shower floor from the rest of the bathroom floor. We knew he was hurting. But it seemed that he had pulled a muscle. Advil was helping. But Joaquin has always had a high tolerance for pain. We monitored through the weekend and he seemed to be improving.
Just in case, on Monday, February 7, we contacted his mobile physician (a healthcare option we did not know about until a few months ago). They scheduled mobile x-rays for the next day, Tuesday, February 8. They came out to do the x-rays as planned. However, Joaquin could not control his body at the scheduled time and they had to reschedule.
On Wednesday, February 9, they returned to his home and were able to successfully take the x-rays. The technician looked concerned. He said we should be hearing from doctor's office that day. We never heard from the doctor's office.
The next day, Thursday, February 10, there was still no word from the doctor's office regarding the x-rays. However, they did send a mobile phlebotomist to draw blood. And Joaquin seemed to be making slow progress in terms of pain management. Until...
That same day, Thursday evening, Joaquin tossed a heavy piece of furniture in his living room during a behavioral episode. Immediately after he had exerted all his strength, he was in obvious pain. This man who typically has a high pain tolerance, could not stand or sit or lay down. He was moaning and cringing. And then he began gasping for air. Although the ER is typically the last place he needs to be, I knew it was exactly the place he needed to be, and we needed to get him there stat. We called 9-1-1 and an ambulance arrived within minutes. We spent all night in the ER undergoing tests and trying to keep Joaquin comfortable and calm.
By Friday, February 11th, Joaquin was seen by the trauma team and was treated for 3 broken ribs and a punctured lung. A drainage tube was placed in his lung cavity and he was admitted to the ICU of a local hospital in San Diego.
Although they saved his life and we could not be more appreciative of the individual medical professionals and the team, there were some mistakes made that we did not anticipate, and that had a profound effect on his experience.
Mistake 1: Med Error - Joaquin's seizure medications were not given to him for the first 24 hours. Even though I handed healthcare workers a list of his current meds 3 times that night (once to the EMT's, once at the ER, and once to the trauma team), somehow he was receiving medications from a hospital stay many years prior. Within the first few hours of Joaquin's admission to the ICU, one of his home support staff went over the meds to make sure that the nurse had the right meds. He caught the mistake and it was supposedly corrected.
Mistake 2: Continued Med Error - However, somehow this correction was not permanently saved in their system. And so, Joaquin still was not receiving correct seizure medications. Meantime, Joaquin was showing signs of agitation, even under heavy sedation.
Mistake 3: Denial of Support Staff - We had planned to continue Joaquin's level of home support while at the hospital. He has 2:1 staffing 24 hours a day. We wanted to ensure his continued safety and the safety of others. We were told that only one person could be with him. We assumed this meant 1:1 staffing 24/7. Since Joaquin was under sedation, and in the spirit of cooperation with and appreciation for healthcare professionals during these difficult pandemic times, we conceded to one support person round the clock.
His 1:1 staff person, Victor, showed up to work with Joaquin, spotted the previously-mentioned medication error, pointed it out to the nurse, ensured that it was corrected, and then was told by the charge nurse that he had to leave. She stated that the policy was that patients in the ICU could only have one "visitor" per day for one hour, and that he had already overstayed the limit (Victor had been there for two hours).
I was fast on the phone with the patient advocate who said that Joaquin was now fully sedated and that there was no need, but that if there was a need, they would contact us right away. She offered a video visit with Joaquin any time we'd like and we scheduled it for 9 pm that night.
At 9 pm, I had not yet received the link. So I called the hospital and spoke to the nurse. Her voice was shaky and she sounded like she was on the verge of tears. She apologized and said that it had been a "rough evening" with Joaquin, and that it wasn't a good time to do a video chat as they finally just got the right concoction of sedation meds to knock him out. I asked if she was okay, and if Joaquin was ok. I told her that we had a team of people who know Joaquin and who are trained to help him and the hospital staff. I told her that we wanted to be there with him. She said that they would be okay now that he was fully sedated, but that she would call if they needed us. I told her that my phone was turned on and she could call at any time. I did not fall asleep that night.
At 1:00 am, my phone rang. It was the nurse. They were ready to take us up on that offer. Within an hour, two of Joaquin's direct support staff were at the hospital, ready to support Joaquin. His hands and feet were tied to the bed and he was highly agitated in spite of the best sedation meds possible. Staff had to use pillows to "hug" him, prevent him from hurting himself with his kicking and writhing, and bring him some calm through their familiar voices and knowing what to say and what to do to help him. It was a horrible night. But the nurse called them "angels." And Joaquin has had not just one, but two support staff present at all times, even in the ICU, ever since that night. No argument.
Following that awful night, at 8:00 am Saturday, February 12, another shift of Joaquin's staff arrived to relieve the overnight angels. One of his team members, Brittany, who always handles Joaquin's meds, double checked with the nurse regarding Joaquin's current medication list. Lo and behold, his medications were still wrong!
Joaquin had not been "freaking out" simply because he's autistic, or even solely because he was in pain. He was experiencing the terror of an imminent seizure! And he had no way to communicate what he was feeling, while alone without his loved ones, while in a new environment, and while being restrained and misunderstood. (Note to all: Behavior is communication!). The meds were then fixed for good, (his staff has been checking and rechecking every shift to make sure), and Joaquin has been adequately sedated to withstand the normal discomforts of his injuries and hospitalization.
Fast forward to Saturday, February 26, it is more than two weeks after Joaquin began this whole ordeal, and after many of his friends, family, and support staff have advocated for him, lost many nights of sleep, and worked tirelessly to encourage him and provide him comfort and security. Joaquin had been intubated with a ventilator for 12 days. He also had a large tube draining blood from his lung cavity, and later, an additional smaller tube to drain what the larger tube was unable to access. He had his arms restrained with soft ties continuously to prevent him from pulling out the tubes, which he managed to do once any way. And his legs had been restrained with soft ties part of the time as well. We were also dealing with the pain of broken ribs, a catheter (which he also pulled out), blown IV's, bruising and skin tears from restraint, fevers, infection, multiple x-rays and CT scans, breathing trials, and finally, after 12 days, the drainage tubes, and then the ventilator, were successfully removed.
As a sibling advocate, I felt tremendous pain, helplessness, and guilt for having left Joaquin alone for that first part of his stay. But while reaching out for help, I learned that Joaquin actually had the right to have a support person with him in spite of Covid policy, according to state and federal guidelines. How could I have not known this?
When the ventilator was removed a couple days ago, we had no idea that Joaquin would not be able to talk, swallow, sit up, walk, or stand. But apparently, this is normal. Joaquin cried tears of relief when the ventilator was finally gone, and tears of exasperation when he realized that he was no longer in control of his body. We continue to remind him that he will be ok, that this is normal, and that day by day, he will regain his strength. He smiles and says in his hoarse voice, "steak is coming." "Steak" is Joaquin's metaphor for the good life. To that we say, "Yup, steak is coming, Joaquin."
Despite the unacceptably chaotic beginning to this story, this has been a journey of learning and atonement for us all. And now, not only is "steak" coming, but as the hospital became keenly aware of Joaquin's unique support needs, and became unquestionably and exceedingly accommodating during his time at the hospital, we were also able to install some brand new slip-resistant flooring throughout his house. And while we were at it, we threw some fresh paint on his walls. Silver linings. Now we're just waiting for that homecoming "steak."
To learn about Joaquin's journey from institutionalization to community living, watch Diana's TEDx Talk here. Or listen to her podcast interview on the Think Inclusive Podcast here. Diana is an educator, speaker, author, and podcast host of Beyond Awareness: Disability Awareness That Matters.
For Diana's free resource for educators, The 5 Keys to Going Beyond Awareness, click here.
Image Description: Joaquin, a man with short, salt and pepper hair, lays in hospital bed with ventilator on his face, as he looks toward his sister, Diana, a woman, with long, wavy, brown hair, who stands leaning over with one arm stretched over his torso and the other massaging his head. Both are Hispanic, middle aged. Joaquin wears a green hospital gown. Diana is wearing a black jacket as well as a white face mask. Medical equipment stands in the background. Photo Credit: Brittany Merrill.