Entertainment tonight
James had an electroencephalogram this afternoon. I want to take him off his anti-seizure medication since he has not had any seizures throughout his recovery and the med has side-effects. His neurologist wanted the EEG to confirm that James is stable enough to be stepped down off the medication. James had a prolonged EEG that lasted days while in intensive care to monitor his brain but he has no memory of it. Today's test was a much shorter version of the test.
The technician explained the process to James as she temporary taped electrodes to his head. James was slightly worried about the test but the technician reassured him that he would sleep through the majority of it--the EGG was that boring. The test begins with a series of strobe lights placed in front of James's face, albeit, with his eyes closed. I immediately thought of Mary Hart from Entertainment Tonight--it's an old silly fact that her voice induced seizures in some people. James made it through the test fine--he snored--Mary Hart did not make an appearance.
Everything feels slightly surreal lately. I have been having the same dream every morning--it is filled with anxiety. I often have anxiety dreams on Sunday night/Monday morning. I would call the approaching discomfort the "Sunday Dread" as the realization that the weekend was over and I had to face another work week came to fruition. I am no longer facing work-related stresses as I am on a two-month New York State Paid Family Leave but the uneasiness remains. In the dream, I have to keep a log of James's medical condition but for some reason, I have forgotten to do it. I keep telling myself that I will review all my various medical notes and complete the log which resembles one of the many spreadsheets I have created for my work as a trusts and estate administrator. Waking up from the dream does not always alleviate the worry because it truly feels as if I have forgotten something particularly important.
There is so much I do not cover with James in a day. We should be working more on his cognitive exercises. I feel guilty if I let him spend time working on his computer instead of regulating his schedule to include more speech therapy or balance exercises.
James has been experiencing changes to his gastrointestinal functioning. I should not really discuss this except for the fact that I decided to attempt to discover the cause and found that the ingredient in his liquid thickener, xanthan gum, may have a side-effect in some people that completely matches James's recent changes. I do not think it is particularly harmful but when I googled the name of his thickener, Simply Thick (one that I heralded a few posts ago), I discovered there is a class action lawsuit against the company (founded by a former Monsanto chemical engineer--a detail I conveniently did not share with James) due to infant deaths after use of the product. Apparently, the product received FDA approval without clinical testing and it seems to be the cause of necrotizing enterocolitis in infants. It made me feel literally sick.
James and I have decided to try alternatives to the thickening agent. Xanthan gum is in a wide array of products from glues to pudding. I am experimenting with Agar Agar now--we'll see how that goes.
I think my anxiety stems from James's vulnerability to basically everything--down to the ingredients of pudding! He will not be in this weakened state forever but it has been difficult for me see him so defenseless.
Yesterday, I broke a terrarium made by Imogen at a friend's birthday party. It was on a shelf in the kitchen and I pulled an extension cord that pushed the glass vessel off the shelf. It shattered all over the kitchen floor which involved vacuuming and then, mopping. We do not have an air-conditioner in that part of the apartment so after cleaning-up, I had to take a shower because I was doused in sweat.
James was in his air-conditioned studio working but wandered into the bathroom to find me. He was worried, wondering what had happened to me since I was in the other side of the apartment cleaning up the mess. His voice was so soft and he said, "I did not know what happened to you." It made me realize the depth of my responsibility for his welfare--on an emotional and psychological level.
Must get back to him. He just came in to ask what I was doing. James wants to watch a show on PBS that addresses the question, "What is art for?"
The technician explained the process to James as she temporary taped electrodes to his head. James was slightly worried about the test but the technician reassured him that he would sleep through the majority of it--the EGG was that boring. The test begins with a series of strobe lights placed in front of James's face, albeit, with his eyes closed. I immediately thought of Mary Hart from Entertainment Tonight--it's an old silly fact that her voice induced seizures in some people. James made it through the test fine--he snored--Mary Hart did not make an appearance.
Everything feels slightly surreal lately. I have been having the same dream every morning--it is filled with anxiety. I often have anxiety dreams on Sunday night/Monday morning. I would call the approaching discomfort the "Sunday Dread" as the realization that the weekend was over and I had to face another work week came to fruition. I am no longer facing work-related stresses as I am on a two-month New York State Paid Family Leave but the uneasiness remains. In the dream, I have to keep a log of James's medical condition but for some reason, I have forgotten to do it. I keep telling myself that I will review all my various medical notes and complete the log which resembles one of the many spreadsheets I have created for my work as a trusts and estate administrator. Waking up from the dream does not always alleviate the worry because it truly feels as if I have forgotten something particularly important.
There is so much I do not cover with James in a day. We should be working more on his cognitive exercises. I feel guilty if I let him spend time working on his computer instead of regulating his schedule to include more speech therapy or balance exercises.
James has been experiencing changes to his gastrointestinal functioning. I should not really discuss this except for the fact that I decided to attempt to discover the cause and found that the ingredient in his liquid thickener, xanthan gum, may have a side-effect in some people that completely matches James's recent changes. I do not think it is particularly harmful but when I googled the name of his thickener, Simply Thick (one that I heralded a few posts ago), I discovered there is a class action lawsuit against the company (founded by a former Monsanto chemical engineer--a detail I conveniently did not share with James) due to infant deaths after use of the product. Apparently, the product received FDA approval without clinical testing and it seems to be the cause of necrotizing enterocolitis in infants. It made me feel literally sick.
James and I have decided to try alternatives to the thickening agent. Xanthan gum is in a wide array of products from glues to pudding. I am experimenting with Agar Agar now--we'll see how that goes.
I think my anxiety stems from James's vulnerability to basically everything--down to the ingredients of pudding! He will not be in this weakened state forever but it has been difficult for me see him so defenseless.
Yesterday, I broke a terrarium made by Imogen at a friend's birthday party. It was on a shelf in the kitchen and I pulled an extension cord that pushed the glass vessel off the shelf. It shattered all over the kitchen floor which involved vacuuming and then, mopping. We do not have an air-conditioner in that part of the apartment so after cleaning-up, I had to take a shower because I was doused in sweat.
James was in his air-conditioned studio working but wandered into the bathroom to find me. He was worried, wondering what had happened to me since I was in the other side of the apartment cleaning up the mess. His voice was so soft and he said, "I did not know what happened to you." It made me realize the depth of my responsibility for his welfare--on an emotional and psychological level.
Must get back to him. He just came in to ask what I was doing. James wants to watch a show on PBS that addresses the question, "What is art for?"
I absolutely love the last paragraph. It is ironic and ridiculous, one one level, given what you are both going through, and on another level, it makes perfect sense. And it made me smile extra.
ReplyDelete