The sum of things
Right now, I feel like Inigo Montoya, one of the characters in the movie "The Princess Bride." As he said, "Let me explain....no, there is too much, let me sum up."
We spent the weekend in ICU with Alan.
Saturday, Alan had a grand mal seizure and fell at his group home. His care staff stayed calm and cool, called the ambulance, then called us. We met them at the hospital where we found a agitated and belligerent Alan. He wanted to go home, even though he had cuts and abrasions on this face and was covered in blood. We found him surprisingly agile, wiggling away from the doctor as she tried to examine him. Discussions of how to calm him left us with little choice but to try medication to calm the storm in his mind and emotions. Kenny followed as Alan was taken to CT scan where he had another grand mal seizure. I was in the ER room when I heard the announcement about needing ativan in CT. I knew what that meant, and peered anxiously out the door down the hall, as if I could see something there.
The hospitalist on call decided to admit Alan to ICU for observation. Luckily, his neurologist was on call as well, so he was consulted too. For then next 18 hours, Alan and I were together in a small room. He yelled at me, threatened to have me arrested, and tried to escape. The staff gave him medication through his IV port to help keep him calm and let him sleep. At 4 am he finally pulled out his IV which meant no more medication. He wouldn't take pills since the thought they were poison and we were all trying to kill him.
As it turns out, the seizures were caused by an interaction between medication meant to help calm him and his seizure medication. What a complicated situation: Autism, developmental delay, seizure disorder, Huntington's. What can we give him and what do we want to achieve? Questions not easily answered. We can drive ourselves crazy wonder about symptoms - drug interaction, decline due to Huntington's - but it is what it is. The happy, gregarious young man we have known is practically swallowed up by whatever is going on in his brain. This week he has been putting his clothes in the trash in anticipation of a hasty evacuation. We are not sure where he will be evacuating to, unless it's to the apartment next door.
I find myself thinking that maybe we are not seeing decline, maybe it is just medication interactions, or seizure disorder. Which door leads to the answer? Regardless, we still have to walk this road together and we have to make the best of what we have right now.
Today Alan is coming home for four days. We are at once fearful and hopeful. What if he tries to escape? What if we must endure four days of refusing medication, accusation, and combative behavior. We could just as easily have a wonderful time with him. Time will tell.
I am hopeful today, and that is a good thing. Reminded of one of my favorite scripture verses: "For I am convinced that neither death, nor life, nor angels, nor principalities, not things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, shall be able to separate us from the love of God, which is in Christ jesus our Lord." (Romans 8:38-39)
Not an easy road, but one lined with unexpected mercies, hope, and the certainty that we are not alone.
We spent the weekend in ICU with Alan.
Saturday, Alan had a grand mal seizure and fell at his group home. His care staff stayed calm and cool, called the ambulance, then called us. We met them at the hospital where we found a agitated and belligerent Alan. He wanted to go home, even though he had cuts and abrasions on this face and was covered in blood. We found him surprisingly agile, wiggling away from the doctor as she tried to examine him. Discussions of how to calm him left us with little choice but to try medication to calm the storm in his mind and emotions. Kenny followed as Alan was taken to CT scan where he had another grand mal seizure. I was in the ER room when I heard the announcement about needing ativan in CT. I knew what that meant, and peered anxiously out the door down the hall, as if I could see something there.
The hospitalist on call decided to admit Alan to ICU for observation. Luckily, his neurologist was on call as well, so he was consulted too. For then next 18 hours, Alan and I were together in a small room. He yelled at me, threatened to have me arrested, and tried to escape. The staff gave him medication through his IV port to help keep him calm and let him sleep. At 4 am he finally pulled out his IV which meant no more medication. He wouldn't take pills since the thought they were poison and we were all trying to kill him.
As it turns out, the seizures were caused by an interaction between medication meant to help calm him and his seizure medication. What a complicated situation: Autism, developmental delay, seizure disorder, Huntington's. What can we give him and what do we want to achieve? Questions not easily answered. We can drive ourselves crazy wonder about symptoms - drug interaction, decline due to Huntington's - but it is what it is. The happy, gregarious young man we have known is practically swallowed up by whatever is going on in his brain. This week he has been putting his clothes in the trash in anticipation of a hasty evacuation. We are not sure where he will be evacuating to, unless it's to the apartment next door.
I find myself thinking that maybe we are not seeing decline, maybe it is just medication interactions, or seizure disorder. Which door leads to the answer? Regardless, we still have to walk this road together and we have to make the best of what we have right now.
Today Alan is coming home for four days. We are at once fearful and hopeful. What if he tries to escape? What if we must endure four days of refusing medication, accusation, and combative behavior. We could just as easily have a wonderful time with him. Time will tell.
I am hopeful today, and that is a good thing. Reminded of one of my favorite scripture verses: "For I am convinced that neither death, nor life, nor angels, nor principalities, not things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, shall be able to separate us from the love of God, which is in Christ jesus our Lord." (Romans 8:38-39)
Not an easy road, but one lined with unexpected mercies, hope, and the certainty that we are not alone.
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