In some ways, the ventilator was really helpful. My mom was sedated and not in pain. She no longer had panic attacks, wasn’t feeling her hunger and her lungs could have a chance to repair. While the ventilator brought some relief, it also brought along numerous complications. A few days after she was put on the ventilator, her kidneys began to fail and she needed dialysis. Luckily, this lasted only one week before her kidneys rebounded. Her hands and arms started swelling and so my sister and I would move her and massage her extremities daily.

After 10 days of being on the ventilator, the time came decide whether to give her a trach or not. If she got a trach, she’d also get a feeding tube. The doctors would then wean her off of sedation and she would likely have to go to a LTACH (Long Term Acute Care Hospital), somewhere she really didn’t want to go. My sister and I considered it for a long time. Not getting a trach would mean death. While we were considering the choice, the pulmonologist told us that my mom had already made the decision. She asked that she get a trach if she needed it. It was a relief that she had made the decision and that burden wasn’t on us. 

After she got her trach and the feeding tube, the doctors tried to wean her off sedation. Many people wake up quickly, but for her, it took a few days. When she finally woke up, she couldn’t move at all. The doctors were worried that something had happened and neurology joined our team. They found that her nerves and muscles functioning and told us that she had “critical illness.” This basically meant was that she had been in bed not moving for so long that her muscles just deteriorated to the point of immobility. We pushed for PT and OT, but they said that the insurance won’t cover therapies if the patient can’t participate enough. I also thought this was was crazy. The person who needs therapy the most doesn’t qualify. That was when my sister and I decided we would do passive range of motion every day. We worked on it daily for the next many months. 

Two days after she woke up, my mom started having seizures. The seizures wouldn’t stop and could not be controlled by typical medications. In order to stop them, they had to sedate her again. It took neuro a while, but finally the seizures were controlled. 

Then, my moms hemoglobin started to drop and the doctor concluded that my mom had internal bleeding somewhere, likely caused by the high dose of steroids. My mom started getting blood transfusions periodically. 

Each day, either my sister or I would be with my mom. We did range of motion, advocated for them to wean the vent to see if she could tolerate it, we brushed her hair, brushed her teeth and cut her nails. I sent a text out each day to her friends and family with updates. Even if my mom was asleep, she was never alone. I think it helped her get better care.

Now, the time came where the hospital had to discharge her. She was stable from their stand point. No more acute issues. She still couldn’t move, she was on and off with her sedation (more asleep than not) and was still on the ventilator (though with only partial support). I hated the idea of moving her. She would have to change doctors and an LTACH doesn’t have access to emergency interventions the way a hospital does. However, we didn’t have much choice in the matter. Case management told us that she had to leave. To ease my concerns, they told me that I could always request for my mom to come back to the hospital if she got worse. 

My mom was discharged from the hospital on 10/3/2023. She would end up returning 10 days later through the ER at a different hospital.