A day without seizures is generally a very good day in this house. We really do try to celebrate the spells of time in between the lengthy tonic episodes that pretty much turn the household upside down no matter how many hundreds we have been through. Anyhow— we have been pretty fortunate during this disaster of a year, 2020, to have some blessedly long spells between said seizures. Today's version of a shitshow is related to seizures for sure—but a tonic seizure was not the cause.
Since the start of the pandemic, Barry and I have become accustomed to staying in bed later in the morning. I mean—what exactly are we rushing to do? As long as I can hear the easy conversation between Michael and my Mom sipping their tea and eating breakfast downstairs, I know I can laze around for another half hour.
This morning, Meaghan poked her head in our room around 9 just prior to starting her workday from home, to announce Michael had taken a lot of meds this AM. And by a lot— she meant the whole day's worth. Morning, afternoon, and night. Normally if Mike mistakenly takes two times worth from the med box (infrequent occurrence) I don't get very excited. He is, aftercall, not pharmacologically naïve as his peds neuro used to point out to me. However, the prospect of what might happen when 3600 mg of Felbatol, 50 mg of ONFI and 600 mg of Lamictal were taken all at once was frightening. I asked him what happened. Standing there towel-clad in the bathroom, having just gotten out of the shower (thank you Jesus) in between saying "I feel so stupid" multiple times—he said he thought today was Friday and took his Friday morning meds. Then, he noticed that Thursday's meds were still in the med box and took two doses because he didn't want to upset his parents. Another thank you Jesus or whatever moment, that he didn't take all three. He then proceeded to tell me he didn't feel dizzy until he was showering. Thank you...
I contacted his neuro and left a message. I was not about to bring him anywhere close to a hospital but wanted assurance we could just ride this out. Barry and I walked him to his room and I instructed him to stay put in bed and yell if he needed anything while I gathered phone, laptop and coffee so I could plant myself bedside. A few minutes later, and I truly mean 2-3 minutes, there was a series of thuds from upstairs. I dashed up the stairs barefoot, tripped somewhere between the landing and Michael's room and arrived at the room in time to try to hold him steady as he was starting to throw up. Barry and Meaghan showed up right behind me and we got him into the bathroom where he could vomit. Barry stood beside a kneeling Michael and I went into Meaghan's room and plopped my face on her made bed while I took some deep breaths and willed my heartrate to slow. Ten minutes later, Barry and I literally dragged Michael back to his room and hoisted him to bed. All this time he was talking coherently though drunken-like and could still answer questions. It was clear by now that this would be a long day.
Michael's neuro called for the second time about 5 hours in. By then he was extremely hard to understand, but could still state his day and year of birth and he'd puked bile into a bucket at least a dozen times. She felt that because he could understand and follow commands, we were headed in the right direction. She noted that when he joked, we'd probably be in the clear. She is just so smart, and calm and kind—I pretty much was sure all would be well after that call. About 4 pm when Michael was trying to go to sleep he said something. I walked over to his bed and said "I didn't hear you". He said, " Donald Trump is an idiot". I let the doctor know. She said, "excellent". Michael slept for a while. He woke up and announced "I'm talking better now". Indeed. He was.
It's after 5 now. All is well. The shitshow is over for today. Thank you...
Thursday, July 30, 2020
Friday, April 3, 2020
When COVID 19 and Routine Medical Care Collide
My 92 year-old Mom extended her stay with us due to the COVID 19 invasion of our country. Prior to extending she had a suitable supply of her daily blood pressure medication. During her stay here, her Primary physician quit working for the large health care system that had taken over one of the local hospital systems in her community. More on THAT another day. Anyhow...I set about finding how I could get her prescription with 0 refills filled before we ran out of pills.
I called the office of my own Primary MD who my Mom has seen several times over the years for a variety of reasons. He works in a large academic health care system in my community where I was employed for over 20 years. More on THAT another day.The extremely kind person I spoke to did her best to accommodate us. Obviously my 92 year-old Mom wasn't going to be visiting any type of health care facility. Goodness, we've handled her like fragile crystal since the competent leaders of my city and state issued stay- at -home policies several weeks ago. (It's nice to live in an enlightened area). So, I was informed that because my Mom hadn't seen aforementioned Primary in 3 years, she "fell out of" his practice which was now "full". (Isn't that amazing? No need to see an MD all that time she has spent here in the past few years!) Because I am aware that our health care system such as it is, is under great duress at this time, I chose not to beg, yell or try to use any connections to convince this awfully nice woman to get my, my husband's AND my son's Primary to fill a damn prescription my Mom's been on for forty plus damn years.😡
Anyhow...with a weak promise to try and get a doctor to agree to call in the script before her med runs out, my pleasant connection to health care offered to set up a video visit ("there will be the same co-pay" she said). I agreed. We set one up. So next week several days after the med runs out, we'll see how it goes with the doc who has never seen my mother, talking to my mother through the computer screen. Yeah. We'll see how it goes. 😆 And, there'll be more on THAT another day.
Meanwhile...(apologies to Colbert) Meaghan offered to call my Mom's former MD's practice back east to see if another MD in the practice would be willing to prescribe the med and call the pharmacy based upon the knowledge my mother had seen the doctor in the fall and she's been on the SAME DAMN MED for over 40 years. I have to say Meaghan was pretty full of herself when she reported how quickly she had been able to resolve this situation that had frustrated ME so much. Later in the day prior to picking up our take-out dinner, Meaghan and I stopped at the pharmacy to get the medication she had managed to get ordered so easily. Not there. No call. No order. 😑
So, today, Meaghan hit the phones again, talked to someone she deemed to be capable---(she even looked my Mom's record up)---and she assured Meaghan she would get one of the doctors to call in the prescription. THIS time, THIS call worked. The med will be ready for pick-up down the street within hours-who knows-maybe minutes. 😁
This is just one little tale of how COVID 19 has changed things. It's not a big deal by a long shot. I am all too aware thousands of people are dying and my professional colleagues are literally putting their lives on the line.
Frankly, I needed to occupy myself writing today so I would not implode at the knowledge that smirky, snarky, wimpy, unqualified Kushner is making life and death decisions during this crisis. WTF! Stay safe. Stay in.
I called the office of my own Primary MD who my Mom has seen several times over the years for a variety of reasons. He works in a large academic health care system in my community where I was employed for over 20 years. More on THAT another day.The extremely kind person I spoke to did her best to accommodate us. Obviously my 92 year-old Mom wasn't going to be visiting any type of health care facility. Goodness, we've handled her like fragile crystal since the competent leaders of my city and state issued stay- at -home policies several weeks ago. (It's nice to live in an enlightened area). So, I was informed that because my Mom hadn't seen aforementioned Primary in 3 years, she "fell out of" his practice which was now "full". (Isn't that amazing? No need to see an MD all that time she has spent here in the past few years!) Because I am aware that our health care system such as it is, is under great duress at this time, I chose not to beg, yell or try to use any connections to convince this awfully nice woman to get my, my husband's AND my son's Primary to fill a damn prescription my Mom's been on for forty plus damn years.😡
Anyhow...with a weak promise to try and get a doctor to agree to call in the script before her med runs out, my pleasant connection to health care offered to set up a video visit ("there will be the same co-pay" she said). I agreed. We set one up. So next week several days after the med runs out, we'll see how it goes with the doc who has never seen my mother, talking to my mother through the computer screen. Yeah. We'll see how it goes. 😆 And, there'll be more on THAT another day.
Meanwhile...(apologies to Colbert) Meaghan offered to call my Mom's former MD's practice back east to see if another MD in the practice would be willing to prescribe the med and call the pharmacy based upon the knowledge my mother had seen the doctor in the fall and she's been on the SAME DAMN MED for over 40 years. I have to say Meaghan was pretty full of herself when she reported how quickly she had been able to resolve this situation that had frustrated ME so much. Later in the day prior to picking up our take-out dinner, Meaghan and I stopped at the pharmacy to get the medication she had managed to get ordered so easily. Not there. No call. No order. 😑
So, today, Meaghan hit the phones again, talked to someone she deemed to be capable---(she even looked my Mom's record up)---and she assured Meaghan she would get one of the doctors to call in the prescription. THIS time, THIS call worked. The med will be ready for pick-up down the street within hours-who knows-maybe minutes. 😁
This is just one little tale of how COVID 19 has changed things. It's not a big deal by a long shot. I am all too aware thousands of people are dying and my professional colleagues are literally putting their lives on the line.
Frankly, I needed to occupy myself writing today so I would not implode at the knowledge that smirky, snarky, wimpy, unqualified Kushner is making life and death decisions during this crisis. WTF! Stay safe. Stay in.
Thursday, April 2, 2020
Before Isolation ... Celebration
CONGRATULATIONS MICHAEL
We're so proud of your accomplishment and so happy we could celebrate with dear friends-many who helped you along the way. There will be a little delay now before you're onto the next step; but just as you achieved THIS goal we know that the next one is well within your reach.
Sunday, March 22, 2020
Reflections
One of Barry's undertakings during our current isolation is rummaging through a cardboard box that was stored in the far recesses of one of our closets. Yesterday, he showed me a wooden plaque which held an 8 x 11 lined sheet of paper covered with glass. It was definitely my handwriting on that now brown-tinged paper. " What IS this?" I asked aloud. "What IS this?"
Today Barry handed me my nursing school yearbook. It was called Reflections and the year was 1971. And there it was...the intro to the yearbook. My words.
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