My husband suffered a hemorrhagic brain stem stroke on 1/1/2026. It has now been a little over four months, and although his progress may seem small to others, to me they are huge victories. He is not fully awake yet, but there are days when he is much more alert and aware than others. His right side appears to be the strongest. He is now moving his hand on command, including opening and closing it. Every day I work with him and test what he can and cannot do.
He is also attempting to move his head and, at times, can do so on command. In addition, there are moments when it looks like he is trying to mouth words. He has shown emotion as well, including crying, which breaks my heart and makes this even harder for me emotionally.
I have researched every possible way to help him, and I am his strongest advocate. However, I feel like many of the doctors are not taking his recovery seriously and continue to say he will never recover. I understand the seriousness of his condition, and I am not unrealistic or delusional about how difficult and uncertain recovery from a brain stem hemorrhage can be. I know there are no guarantees. Still, I continue to pray, hope, and fight for his progress. He has a very strong support system and a large family who loves him deeply.
What is most difficult is feeling like the medical team dismisses the improvements I witness every single day. I stay with him 24/7 at the rehab facility and see changes that others may miss during brief interactions. I even have videos showing him following commands, moving his arm purposefully, and appearing more awake and aware, yet none of it seems to matter to them.
The rehab floor physician often comes in briefly, listens to his heart with a stethoscope, and leaves without really addressing my questions or concerns. One of my biggest concerns right now is his blood pressure. For the last three months, it had been stable on his medications. Over the past month, however, it has become elevated again, especially the diastolic number, which has reached as high as 110. The doctor’s response has simply been to increase his blood pressure medication and say this is common with brain injury patients.
I understand that uncontrolled blood pressure can happen after a severe brain injury. However, my concern is that since it had been stable for months and is now suddenly fluctuating, shouldn’t there be more investigation into why this is happening rather than only increasing medication? During a hospital stay in March, another doctor refused to increase his medication because they felt it could dangerously lower his blood pressure. Yet now the rehab doctor continues increasing it without much discussion or apparent concern. I do not know if my worries are valid, but I feel they should at least be taken seriously.
I also have concerns about his respiratory care. The pulmonologist has only seen him twice since he arrived at the facility and recently placed him back on full ventilator support, stating that because of his mental status he will never come off the trach or be decannulated. Before this setback, he had actually been doing well on CPAP trials. His CO2 levels later increased, so they returned him to full ventilator support, but now the pulmonologist refuses to attempt further CPAP or breathing trials until he is “fully awake.”
I understand there may be legitimate medical reasons for caution, but I worry that keeping him continuously on full ventilator support without additional trials could make him more ventilator dependent over time. What frustrates me most is that these decisions seem based on only a few minutes of observation rather than the day-to-day progress I witness as the person who is constantly by his side.
Right now, I feel scared, overwhelmed, and helpless. I am doing everything I possibly can to advocate for him, but I do not know how to get the doctors to truly listen or take his progress seriously. I am terrified that I am not doing enough to help his recovery.