Today is the 6 month anniversary of Awesome's SEEG surgery. There are some days and life experiences that you'll never forget. That day was one of them.
Early January in New England. Cold. And at 4:30 AM, very dark.
We'd choreographed the morning plan, rehearsing it over and over again in our minds, looking for holes--for things we'd forgotten. In those kind of situations, one does everything possible ahead of time. We'd laid out our clothes for the day. Packed Awesome's and my suitcases. Put coats and boots by the back door. Made last minute to-do lists for the morning.
And then, we'd gone to bed early, sleeping deeply with the exhaustion of worry and anticipation years in the making. Sleeping deeply from the stress of having flown 1200 miles the day before, worrying that Awesome would seize mid-flight. Worrying that we'd be the ones who caused an emergency landing for a whole planeload of people. Worrying if Awesome would be OK despite delayed treatment if an emergency landing was necessary. Worrying if we were insane to be flying on a commercial airline with a child with intractable status seizures. But all that worry had been for nothing. Awesome hadn't seized. Everything had, unlike earlier flights, gone perfectly, even with changing planes. And then the next day--yesterday--we'd spent a quiet day visiting with our hosts, our friends who were generously housing us--and would be housing my husband David for the entire 3 weeks we were here for medical care. But the anticipation had still been weighing heavily on us. And so we had slept well until the alarm sounded.
As David headed to the bathroom to shower, I, having showered the night before, dressed, pulled a warm sweater over my clothes, and quietly worked my way through my morning-of-surgery to-do list. After I woke Awesome at the appointed time, David exited the bathroom to start his own to-do list, while Awesome and I took our turn in the bathroom.
Awesome's instructions from her neurosurgeons for that morning (she was not allowed to do it the night before--it had to be that morning) included showering with a new bar of antibacterial soap and washing her hair. It was a tall order for a child with intractable epilepsy who is prone to seizures when woken early in the morning, and I won't lie--I was very worried that we'd not make it through the next hour without a seizure.
Things started off well enough. Going through our bathroom routines simultaneously, I was up to brushing my teeth and packing up our toothbrushes and Awesome was in the shower, her hair washed, soaping up her body, dutifully singing (it's my way of knowing that she's not seizing from moment to moment while she showers) even if somewhat dully, intermittently stopping as a little seizure caused momentary speech arrest, but then resuming again.
Everything was fine. Until it wasn't. Very suddenly. First Awesome was quiet longer than usual. So long that I asked her if she was OK.
No, she said. She was not OK. She was about to have a big seizure.
Things happened very quickly. So quickly that I have trouble remembering exactly what happened in what order. Somehow, I simultaneously helped her out of the shower--naked and dripping water all over the floor--turned the shower off, wrapped two bath towels around her (top and bottom), and, as her head was already turning and she was no longer able to stand, kept her from falling while simultaneously easing her onto the floor of the bathroom. The door is open in the photo, but I have no idea how and why and when that happened. And how Awesome ended up in the doorway. But as soon as I could cover her nakedness, David came rushing into the room.
Awesome's last big seizure previous to our trip had landed her in the ER, after two doses of midazolam had failed to stop it. That same midazolam had also depressed her breathing so severely that by the time the EMT's arrived she was turning blue all over (oxygenation in the 60's, heartrate of 159) and had little in the way of breathing drive--and yet was still seizing. It was the kind of seizure that a parent has nightmares about. And it was all still fresh in my mind. And so when her seizure that surgery morning was still going at 3 minutes, we decided that we were taking no chances. We gave her rescue meds--and were just starting to get worried because she was still seizing at the five minute mark--when the seizure finally slowed and stopped.
And there we were sitting on the floor of the bathroom. In the dark of early morning. There was no time to catch our breaths. No time to feel traumatized. No time to feel anything but be thankful that the seizure had stopped, and then get up and do what had to be done. We had to be at the hospital in less than an hour. The private driver we'd hired for this morning would be here in less than half an hour. And Awesome was flat out unconscious. Wrapped in two towels. On the floor. With wet hair. And soap all over her body. In less than half an hour, she had to be downstairs and ready to be helped into the car--dressed, coated, booted, with hat on her head. And everything David and I needed for the day, all of Awesome's meds, and everything Awesome and I needed for the next week had to be downstairs, ready to pop into the trunk of the driver's car.
David took care of our things. I took care of Awesome. It's not easy to dry and dress a completely unconscious 125 lb person. Even babies help by pushing limbs through arms and legs of clothing. Unconscious people can't and don't. And unconscious people are heavier than conscious people. But somehow, racing the clock--with the help of adrenaline--I managed it. I didn't even consider combing and drying her hair. Or rinsing the soap off her body where it had dried. There was no time. The minute I had her dressed, I grabbed the last of our bathroom things, consulted my to-do list, and accomplished the last tasks on it while Awesome slept on the bathroom floor. David, while carrying things up and down the stairs--quietly because our hosts were still asleep--came back to tell me that the driver was already outside and that he'd told the driver we'd be out as soon as we could manage it.
How to get an unconscious 125 lb Awesome down a flight of stairs? Carrying her was out of the question. She was simply too heavy--and I wore an orthopedic boot on one of my feet, the consequence of tearing ligaments in my foot after misjudging how many steps were left on the stairway while I was carrying a boatload of things downstairs several weeks earlier. I still had extensive bruising. And the boot was just awkward. No, all three of us would end up with injuries trying to carry an unconscious Awesome down the stairs.
I attempted to wake Awesome. I succeeded in getting her present enough to be able to sit up with help. And then with help from David to get her into a standing position, to get her to bear weight on her legs. But she kept blacking out and starting to go down. I spotted her from behind until we were in the hallway near the stairs where we eased her back down into a sitting position. And then as she alternated between dosing and being half awake, David and I moved her down the stairs. I stood on the stairs below her, bent over and facing her as she sat on the steps above me. I pulled her feet onto the next lower step while saying, "feet." And David, crouched on the stairs above her, as soon as I had positioned her feet on the next lower step, pushed her bottom off the step on which she sat, onto the next lower step, while saying, "Butt." And so, we moved her down the stairs, one step at a time, to the rhythm of "feet," "butt," "feet," butt. When we reached the landing, David steadied and kept her upright, while I pulled her across the landing by the feet/legs. In all this moving of Awesome down the stairs, she was mostly unconsciousness and/or sleeping. She woke only a few times to ask, "Wait, what's happening?" or "What are you doing?" Never conscious long enough to hear and process the answer before she was gone again.
By the time we reached the bottom of the stairs, David and I were exhausted, but there was no time to worry about how we felt. While David rushed to the back door to meet the driver and load our suitcases into his trunk, I helped Awesome to her feet again. Thankfully, she was starting to come round more by now. She easily bore her own weight on her legs even if she was unsteady on her feet. I spotted her from behind by placing my arms around her chest and walking behind her with my legs wide apart in case she should suddenly lose consciousness, lurch, and start to go down. It was a long walk to the back door as we had to walk across the long kitchen, in the wrong direction, negotiate a step, and then walk back again through a hallway as long as the kitchen. By the time we got to the bench by the back door, Awesome was somewhat more conscious. Conscious enough for me to sit her down on the bench while I dressed her in her coat, pulled a beanie over her wet head, and helped her get her feet into her boots. David, having loaded the suitcases into the car, helped me escort Awesome (I was still spotting her) to the car and get her safely into the backseat, while I scampered back inside to get my own coat, boot, and hat on and collect a last minute thing or two.
After the fact, Awesome tells us that the first thing she remembered after the seizure that morning was sitting in the back seat of the driver's car while I was still inside, wondering where she was and how she'd gotten there.
The drive to the Children's Hospital was uneventful. Driving through the cold and dark to the hospital knowing what was about to happen--two neurosurgeons were going to drill 10 burr holes in Awesome's head and thread electrodes directly into her brain (where they'd remain for the week to come)--both made everything more real and at the same time, more surreal. We simply could not continue to live the way we were living. Antiepileptic drugs didn't help Awesome at all. And CBD was no longer helping as much as it once did. Each big seizure had become terrifying as we worried whether it would stop. And if it didn't stop, if the rescue drugs would stop it. And if they didn't, whether Awesome's breathing would end up compromised while her seizure just went on and on and on. I loved this child. And was terrified she would lose some part of herself. Some essential part of herself in the surgeries today and the next week. That she would no longer be the loving child who leaned into me for comfort. Who was happy. And social. And smart. And agreeable. And an utter joy. Our precious daughter. But I worried even more about the possibility that one of these seizures would claim her. And about the fact that she was getting more and more exhausted from constant seizures. And her world and life were shrinking. She deserved life. And a better life than she was living. I thought and felt all these things and more as we drove through the fading darkness of the early morning in the city and I watched people walking and waiting and sipping their early morning coffee, trying to wake up.
When we arrived at the hospital, I found a wheelchair for Awesome while David found a cart to load all our luggage on, and we made our way into the hospital, through the revolving door, and found our way to whatever place we were to report to. And did everything that we were asked. And followed people where we were supposed to go. Until, at some point, it was time to see the nurses and the anesthesiologists and the neurosurgeons. And then, Awesome got an IV and "something to relax her" and I explained how badly the morning had gone. And why she still had wet hair. And why she was covered with soap. And they told me not to worry--that they would wash her hair and body as part of the preparation for her surgery, once she was sedated and no longer conscious. And that I shouldn't worry about the fact that she had been given a rescue med that morning--they would factor that into her anesthesia plan.
And then the next thing we knew, we were in the MRI room, where we were told to kiss her and say our good-byes to her. She remembers none of that. She was already unable to remember anything because of the drug to "relax her." And then they promised to take good care of her. Turning and walking out of that room was one of the harder things we've had to do in our lives.
We went upstairs and registered with the surgery department so that we could get hourly updates. And then, the hard part started. Waiting to hear. I was strangely calm. In the months leading up to surgery, I'd been so nervous at times that my doctor had prescribed prescription meds--an antihistamine--to help me with anxiety. But once we were finally there, I was not anxious. We got our updates and passed them on to our friends and relatives. And prayed. And waited. And 5 hours after surgery started, we got word to come upstairs and meet with the neurosurgeons. Everything had gone well. And Awesome's SEEG electrodes were in place. We were to go upstairs to the ICU, where the anesthesiologists would meet with us to tell us how things had gone with anesthesia, and then as soon as Awesome was awake and settled, we could join her in her ICU room.
That ICU room was a little bit of a blur in my mind. I do remember that the neurosurgeons came by to check on Awesome again. The neurosurgeon told us that she was doing well, and that if everything continued to go well, Awesome would be transferred to a room on the neurology floor by the end of the next day. Things did go well. And she was transferred to a room on the neurology floor where she stayed for the next week until her second surgery.
Remembering all this 6 months ago is emotional even now. I'll try to tell the story of her SEEG monitoring and her second surgery in the next week or so, as those 6 month anniversaries take place.
Early January in New England. Cold. And at 4:30 AM, very dark.
We'd choreographed the morning plan, rehearsing it over and over again in our minds, looking for holes--for things we'd forgotten. In those kind of situations, one does everything possible ahead of time. We'd laid out our clothes for the day. Packed Awesome's and my suitcases. Put coats and boots by the back door. Made last minute to-do lists for the morning.
And then, we'd gone to bed early, sleeping deeply with the exhaustion of worry and anticipation years in the making. Sleeping deeply from the stress of having flown 1200 miles the day before, worrying that Awesome would seize mid-flight. Worrying that we'd be the ones who caused an emergency landing for a whole planeload of people. Worrying if Awesome would be OK despite delayed treatment if an emergency landing was necessary. Worrying if we were insane to be flying on a commercial airline with a child with intractable status seizures. But all that worry had been for nothing. Awesome hadn't seized. Everything had, unlike earlier flights, gone perfectly, even with changing planes. And then the next day--yesterday--we'd spent a quiet day visiting with our hosts, our friends who were generously housing us--and would be housing my husband David for the entire 3 weeks we were here for medical care. But the anticipation had still been weighing heavily on us. And so we had slept well until the alarm sounded.
As David headed to the bathroom to shower, I, having showered the night before, dressed, pulled a warm sweater over my clothes, and quietly worked my way through my morning-of-surgery to-do list. After I woke Awesome at the appointed time, David exited the bathroom to start his own to-do list, while Awesome and I took our turn in the bathroom.
Awesome's instructions from her neurosurgeons for that morning (she was not allowed to do it the night before--it had to be that morning) included showering with a new bar of antibacterial soap and washing her hair. It was a tall order for a child with intractable epilepsy who is prone to seizures when woken early in the morning, and I won't lie--I was very worried that we'd not make it through the next hour without a seizure.
Things started off well enough. Going through our bathroom routines simultaneously, I was up to brushing my teeth and packing up our toothbrushes and Awesome was in the shower, her hair washed, soaping up her body, dutifully singing (it's my way of knowing that she's not seizing from moment to moment while she showers) even if somewhat dully, intermittently stopping as a little seizure caused momentary speech arrest, but then resuming again.
Everything was fine. Until it wasn't. Very suddenly. First Awesome was quiet longer than usual. So long that I asked her if she was OK.
No, she said. She was not OK. She was about to have a big seizure.
Things happened very quickly. So quickly that I have trouble remembering exactly what happened in what order. Somehow, I simultaneously helped her out of the shower--naked and dripping water all over the floor--turned the shower off, wrapped two bath towels around her (top and bottom), and, as her head was already turning and she was no longer able to stand, kept her from falling while simultaneously easing her onto the floor of the bathroom. The door is open in the photo, but I have no idea how and why and when that happened. And how Awesome ended up in the doorway. But as soon as I could cover her nakedness, David came rushing into the room.
Awesome's last big seizure previous to our trip had landed her in the ER, after two doses of midazolam had failed to stop it. That same midazolam had also depressed her breathing so severely that by the time the EMT's arrived she was turning blue all over (oxygenation in the 60's, heartrate of 159) and had little in the way of breathing drive--and yet was still seizing. It was the kind of seizure that a parent has nightmares about. And it was all still fresh in my mind. And so when her seizure that surgery morning was still going at 3 minutes, we decided that we were taking no chances. We gave her rescue meds--and were just starting to get worried because she was still seizing at the five minute mark--when the seizure finally slowed and stopped.
And there we were sitting on the floor of the bathroom. In the dark of early morning. There was no time to catch our breaths. No time to feel traumatized. No time to feel anything but be thankful that the seizure had stopped, and then get up and do what had to be done. We had to be at the hospital in less than an hour. The private driver we'd hired for this morning would be here in less than half an hour. And Awesome was flat out unconscious. Wrapped in two towels. On the floor. With wet hair. And soap all over her body. In less than half an hour, she had to be downstairs and ready to be helped into the car--dressed, coated, booted, with hat on her head. And everything David and I needed for the day, all of Awesome's meds, and everything Awesome and I needed for the next week had to be downstairs, ready to pop into the trunk of the driver's car.
David took care of our things. I took care of Awesome. It's not easy to dry and dress a completely unconscious 125 lb person. Even babies help by pushing limbs through arms and legs of clothing. Unconscious people can't and don't. And unconscious people are heavier than conscious people. But somehow, racing the clock--with the help of adrenaline--I managed it. I didn't even consider combing and drying her hair. Or rinsing the soap off her body where it had dried. There was no time. The minute I had her dressed, I grabbed the last of our bathroom things, consulted my to-do list, and accomplished the last tasks on it while Awesome slept on the bathroom floor. David, while carrying things up and down the stairs--quietly because our hosts were still asleep--came back to tell me that the driver was already outside and that he'd told the driver we'd be out as soon as we could manage it.
How to get an unconscious 125 lb Awesome down a flight of stairs? Carrying her was out of the question. She was simply too heavy--and I wore an orthopedic boot on one of my feet, the consequence of tearing ligaments in my foot after misjudging how many steps were left on the stairway while I was carrying a boatload of things downstairs several weeks earlier. I still had extensive bruising. And the boot was just awkward. No, all three of us would end up with injuries trying to carry an unconscious Awesome down the stairs.
I attempted to wake Awesome. I succeeded in getting her present enough to be able to sit up with help. And then with help from David to get her into a standing position, to get her to bear weight on her legs. But she kept blacking out and starting to go down. I spotted her from behind until we were in the hallway near the stairs where we eased her back down into a sitting position. And then as she alternated between dosing and being half awake, David and I moved her down the stairs. I stood on the stairs below her, bent over and facing her as she sat on the steps above me. I pulled her feet onto the next lower step while saying, "feet." And David, crouched on the stairs above her, as soon as I had positioned her feet on the next lower step, pushed her bottom off the step on which she sat, onto the next lower step, while saying, "Butt." And so, we moved her down the stairs, one step at a time, to the rhythm of "feet," "butt," "feet," butt. When we reached the landing, David steadied and kept her upright, while I pulled her across the landing by the feet/legs. In all this moving of Awesome down the stairs, she was mostly unconsciousness and/or sleeping. She woke only a few times to ask, "Wait, what's happening?" or "What are you doing?" Never conscious long enough to hear and process the answer before she was gone again.
By the time we reached the bottom of the stairs, David and I were exhausted, but there was no time to worry about how we felt. While David rushed to the back door to meet the driver and load our suitcases into his trunk, I helped Awesome to her feet again. Thankfully, she was starting to come round more by now. She easily bore her own weight on her legs even if she was unsteady on her feet. I spotted her from behind by placing my arms around her chest and walking behind her with my legs wide apart in case she should suddenly lose consciousness, lurch, and start to go down. It was a long walk to the back door as we had to walk across the long kitchen, in the wrong direction, negotiate a step, and then walk back again through a hallway as long as the kitchen. By the time we got to the bench by the back door, Awesome was somewhat more conscious. Conscious enough for me to sit her down on the bench while I dressed her in her coat, pulled a beanie over her wet head, and helped her get her feet into her boots. David, having loaded the suitcases into the car, helped me escort Awesome (I was still spotting her) to the car and get her safely into the backseat, while I scampered back inside to get my own coat, boot, and hat on and collect a last minute thing or two.
After the fact, Awesome tells us that the first thing she remembered after the seizure that morning was sitting in the back seat of the driver's car while I was still inside, wondering where she was and how she'd gotten there.
The drive to the Children's Hospital was uneventful. Driving through the cold and dark to the hospital knowing what was about to happen--two neurosurgeons were going to drill 10 burr holes in Awesome's head and thread electrodes directly into her brain (where they'd remain for the week to come)--both made everything more real and at the same time, more surreal. We simply could not continue to live the way we were living. Antiepileptic drugs didn't help Awesome at all. And CBD was no longer helping as much as it once did. Each big seizure had become terrifying as we worried whether it would stop. And if it didn't stop, if the rescue drugs would stop it. And if they didn't, whether Awesome's breathing would end up compromised while her seizure just went on and on and on. I loved this child. And was terrified she would lose some part of herself. Some essential part of herself in the surgeries today and the next week. That she would no longer be the loving child who leaned into me for comfort. Who was happy. And social. And smart. And agreeable. And an utter joy. Our precious daughter. But I worried even more about the possibility that one of these seizures would claim her. And about the fact that she was getting more and more exhausted from constant seizures. And her world and life were shrinking. She deserved life. And a better life than she was living. I thought and felt all these things and more as we drove through the fading darkness of the early morning in the city and I watched people walking and waiting and sipping their early morning coffee, trying to wake up.
When we arrived at the hospital, I found a wheelchair for Awesome while David found a cart to load all our luggage on, and we made our way into the hospital, through the revolving door, and found our way to whatever place we were to report to. And did everything that we were asked. And followed people where we were supposed to go. Until, at some point, it was time to see the nurses and the anesthesiologists and the neurosurgeons. And then, Awesome got an IV and "something to relax her" and I explained how badly the morning had gone. And why she still had wet hair. And why she was covered with soap. And they told me not to worry--that they would wash her hair and body as part of the preparation for her surgery, once she was sedated and no longer conscious. And that I shouldn't worry about the fact that she had been given a rescue med that morning--they would factor that into her anesthesia plan.
And then the next thing we knew, we were in the MRI room, where we were told to kiss her and say our good-byes to her. She remembers none of that. She was already unable to remember anything because of the drug to "relax her." And then they promised to take good care of her. Turning and walking out of that room was one of the harder things we've had to do in our lives.
We went upstairs and registered with the surgery department so that we could get hourly updates. And then, the hard part started. Waiting to hear. I was strangely calm. In the months leading up to surgery, I'd been so nervous at times that my doctor had prescribed prescription meds--an antihistamine--to help me with anxiety. But once we were finally there, I was not anxious. We got our updates and passed them on to our friends and relatives. And prayed. And waited. And 5 hours after surgery started, we got word to come upstairs and meet with the neurosurgeons. Everything had gone well. And Awesome's SEEG electrodes were in place. We were to go upstairs to the ICU, where the anesthesiologists would meet with us to tell us how things had gone with anesthesia, and then as soon as Awesome was awake and settled, we could join her in her ICU room.
That ICU room was a little bit of a blur in my mind. I do remember that the neurosurgeons came by to check on Awesome again. The neurosurgeon told us that she was doing well, and that if everything continued to go well, Awesome would be transferred to a room on the neurology floor by the end of the next day. Things did go well. And she was transferred to a room on the neurology floor where she stayed for the next week until her second surgery.
Remembering all this 6 months ago is emotional even now. I'll try to tell the story of her SEEG monitoring and her second surgery in the next week or so, as those 6 month anniversaries take place.
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