Day Family
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We have hit the 6 month mark post Johns stroke. Disability is running out soon and we have not received a response on social security yet. I have been told it can take a year or more for young stroke patients to receive a response. The kids are not eligible for benefits until John is approved. I am unable to work right now because there is no one to watch our boys or take care of Johns daily phone calls to insurance, social security, case managers, etc.
John was 33 on December 11th when he began to feel dizzy, was seeing “shinys” (his word), has an intense headache and his left arm “fell asleep”. I urged him to get to the ER but he said he needed to stay at work and would just drink water. Several hours later I received a text saying he was at the hospital. My immediate feeling was that he was having a heart attack. I mentioned stroke but I really felt like a heart attack was most likely due to his age. I didn’t realize just how many young people have strokes. A couple hours later an emergency room neurologist called me asking questions that I just couldn’t understand. He told me my husband was unresponsive and I needed to immediately get to the hospital as he was in the critical care unit. After rousing my mom to watch our boys and getting an uber I finally made my way to the hospital which was about 30 minutes away around midnight. When I arrived to Johns room he didn’t look bad. He had an IV and some oxygen lines but other than that all looked ok. He woke at some point needing to use the restroom. He attempted to get out of the bed but I called for a nurse since he couldn’t get up with the wires. In the morning he was talking. He seemed pretty normal except that his speech was slurred. He sounded like someone who maybe had a little many drinks trying to have an intelligent conversation. The neurologist visited and said he sounded fine to him. I guess since I talked to John daily I was able to catch the slight differences in his speech which I voiced to the Dr. John was even able to “argue” religion with our Pastor that morning. Around 10 the next morning he grew a little agitated. I felt like maybe he needed some rest and since I had been up over 24 hours straight at that point I decided to find his car and drive home to shower and see our boys who had stayed home from school that day not knowing what was happening. I was gone exactly 3 hours when I pulled back into the hospital parking lot and the phone was ringing. John was being taking into emergency surgery. During a routine speech evaluation in preparation of moving him to a normal unit he had “gone blank”. Staff immediately took him down for a CT scan which showed a split carotid artery which threw a clot into his brain. The surgeon was unable to get it because of how entangled it had become. He placed a shunt to try and avoid further clots. From there everything just spiraled downhill. The drs did not give much hope that he would survive. I was told if he didn’t have immediate surgery to remove a portion of his skull he would definitely not make it. Then the drain started to clog so they had to go back in and move it. Then he got some sort of infection and had a dangerously high fever. They used cooling blankets which made his room like an ice chest. He had so many tubes and wires there was barely an inch of skin to touch. His body puffed up and swelled so much that his eyes couldn’t even be pried open to check his pupils at one point. He was intubated too long and needed a tracheotomy and feeding tube placed. Then he developed hydrocephalus and had to undergo another brain surgery to place a shunt. After this he finally “woke up” and began responding more. They wanted to send him to an LTAC but I fought it. After going to the highest I could at the HMO I was able to get them to agree to send him to a respiratory hospital for rehab to get his trach removed. On Valentine’s Day they removed his trach. I then fought for him to go to an ARU instead of a nursing home. Unfortunately he was not quite ready for ARU and had to be moved but we found a place that accepted young, brain injury patients. After a while there he needed his skull put back on and they felt he was ready to go back to ARU. So after his surgery he was sent back to ARU. He did make some progress but unfortunately the progress is slow and they could not justify the need for more time to insurance. I was given two options. Take him home where he needs 24/7 care and a hospital like set up or send him to a nursing facility. With 3 young children and a small rented apartment there was no way I could bring John home and provide what he needs. I was given two options for nursing homes. One had 3 stars total (though most were 1 Star reviews) and was a bit too far for us to visit with any regularity. So I obviously chose the second choice-which isn’t great. John has commented several times “can you imagine how bad the other place must be”. The answer is no. No I cannot imagine how it could be much worse.
John was 33 on December 11th when he began to feel dizzy, was seeing “shinys” (his word), has an intense headache and his left arm “fell asleep”. I urged him to get to the ER but he said he needed to stay at work and would just drink water. Several hours later I received a text saying he was at the hospital. My immediate feeling was that he was having a heart attack. I mentioned stroke but I really felt like a heart attack was most likely due to his age. I didn’t realize just how many young people have strokes. A couple hours later an emergency room neurologist called me asking questions that I just couldn’t understand. He told me my husband was unresponsive and I needed to immediately get to the hospital as he was in the critical care unit. After rousing my mom to watch our boys and getting an uber I finally made my way to the hospital which was about 30 minutes away around midnight. When I arrived to Johns room he didn’t look bad. He had an IV and some oxygen lines but other than that all looked ok. He woke at some point needing to use the restroom. He attempted to get out of the bed but I called for a nurse since he couldn’t get up with the wires. In the morning he was talking. He seemed pretty normal except that his speech was slurred. He sounded like someone who maybe had a little many drinks trying to have an intelligent conversation. The neurologist visited and said he sounded fine to him. I guess since I talked to John daily I was able to catch the slight differences in his speech which I voiced to the Dr. John was even able to “argue” religion with our Pastor that morning. Around 10 the next morning he grew a little agitated. I felt like maybe he needed some rest and since I had been up over 24 hours straight at that point I decided to find his car and drive home to shower and see our boys who had stayed home from school that day not knowing what was happening. I was gone exactly 3 hours when I pulled back into the hospital parking lot and the phone was ringing. John was being taking into emergency surgery. During a routine speech evaluation in preparation of moving him to a normal unit he had “gone blank”. Staff immediately took him down for a CT scan which showed a split carotid artery which threw a clot into his brain. The surgeon was unable to get it because of how entangled it had become. He placed a shunt to try and avoid further clots. From there everything just spiraled downhill. The drs did not give much hope that he would survive. I was told if he didn’t have immediate surgery to remove a portion of his skull he would definitely not make it. Then the drain started to clog so they had to go back in and move it. Then he got some sort of infection and had a dangerously high fever. They used cooling blankets which made his room like an ice chest. He had so many tubes and wires there was barely an inch of skin to touch. His body puffed up and swelled so much that his eyes couldn’t even be pried open to check his pupils at one point. He was intubated too long and needed a tracheotomy and feeding tube placed. Then he developed hydrocephalus and had to undergo another brain surgery to place a shunt. After this he finally “woke up” and began responding more. They wanted to send him to an LTAC but I fought it. After going to the highest I could at the HMO I was able to get them to agree to send him to a respiratory hospital for rehab to get his trach removed. On Valentine’s Day they removed his trach. I then fought for him to go to an ARU instead of a nursing home. Unfortunately he was not quite ready for ARU and had to be moved but we found a place that accepted young, brain injury patients. After a while there he needed his skull put back on and they felt he was ready to go back to ARU. So after his surgery he was sent back to ARU. He did make some progress but unfortunately the progress is slow and they could not justify the need for more time to insurance. I was given two options. Take him home where he needs 24/7 care and a hospital like set up or send him to a nursing facility. With 3 young children and a small rented apartment there was no way I could bring John home and provide what he needs. I was given two options for nursing homes. One had 3 stars total (though most were 1 Star reviews) and was a bit too far for us to visit with any regularity. So I obviously chose the second choice-which isn’t great. John has commented several times “can you imagine how bad the other place must be”. The answer is no. No I cannot imagine how it could be much worse.
Organizer
Melissa Day
Organizer
Santa Clarita, CA
