Service Dog for Alex Whited
Donation protected
We are trying to raise funds to train a service dog for my daughter.
Here is our story:
Today I want to wish my oldest daughter a happy birthday. But this birthday is different, because 6 months ago I doubted we would ever see this day together. I have put off writing this story out because, frankly, it's pretty traumatic and difficult to relive. But today seems like as good a day as any. It's very long. I apologize in advance.
On October 5th, I joined my two oldest daughters, Alex & Jackie, on a road trip to Phoenix. The purpose of this trip was to attend a Jonas Brothers concert. Well, that was their purpose. MY purpose was to make sure my girls didn’t destroy each other during the hours locked in the car. "It’s the Jonas Brothers," they said. "It’ll be fun," they said. Narrator: It was NOT fun.
Alex had been diagnosed with epilepsy about 10 months prior. She did verify that the concert was “epilepsy friendly,” but that is apparently a subjective moniker. Alex made it to the last 4 songs in the concert without too much issue. Then I noticed her making some head movements that I had come to recognize as early seizure signs. I asked if she was ok, & she didn’t respond.
We had seats on the floor, but we were in the center of the row, so Alex just started pushing people out of her way & ran toward the open space on the floor. I followed her, & when we got out of the rows she turned to me & said, “This is going to be bad.” Then the seizure started.
She went down. I tried to catch her, but I ended up flying over her & sliding across the floor due to all the confetti. I clambered back to Alex & put my hands under her head to make sure she didn’t hurt herself. The EMTs for the arena came & when she stopped seizing they put her on a gurney & transported her to the medical room. Once there, the paramedics from Phoenix Fire Department came & gave her meds, but she had another seizure. The decision was made to take her to the hospital via ambulance. She had yet another seizure en route. We arrived at Banner University Hospital & Alex had multiple seizures in the ER, so they admitted her.
After 3 days & multiple EEGs, the neurologists there decided that she was safe to travel to get back to her regular neurologist in El Paso. I wasn’t especially comfortable with the idea of an 8 hour drive like that, but they told me just to keep her safe if she seizes & keep going. That turns out to have been a horrible idea.
At about 1am, driving down I-10 in the middle of nowhere, Alex started seizing. Jackie was tasked with making sure Alex didn’t hurt herself during the seizure while I tried to “keep going.” After several minutes of convulsions, Alex just flopped over. That was new. I checked for breath & found that she wasn’t breathing. I felt for a pulse on her neck & we had a pulse, so I was trying to figure out the best place to pull over. As I was pulling over, I lost her pulse. My child had no pulse.
We were just outside of Deming, NM and I had to yank my daughter out of the car & do CPR on the side of the interstate. Jackie was on the phone with 911 dispatch, trying to describe where we were. After several minutes like this, Alex took a big gasp of air & came back. The ambulance finally arrived & we were transported to the Mimbres Memorial Hospital and Nursing Home.
We stayed there for 2 days, trying to get her transported to El Paso so that her neurologist could see her. During our stay in Deming, Alex had numerous seizures where she stopped breathing again. Luckily, no more cardiac arrest. We finally got a transport to El Paso, and Alex was admitted to Providence Memorial Hospital’s ICU.
We stayed at Providence for almost a week, but the EEGs they performed showed no seizure activity. They decided her seizures were psychogenic & decided she should go home & follow up with her neurologist. Well, nothing is ever that simple, is it?
On the way home, she did it again. She flopped over, no breathing, no pulse. Since I was in the city this time, I just raced her to the nearest emergency room. When we arrived at the emergency room at Sierra Providence East, I had to leave Maya (my youngest) in the car with Alex’s lifeless body while I ran in & asked for help. They came out & saw her & things started moving quickly. The nurse was trying to do chest compressions on Alex while she was in the wheelchair being raced to the trauma room. We got in there & the doctor asked a few questions. He realized she had been down for 3-5 minutes at that point. He literally said, “Fuck this! I’m intubating.” So began my daughter’s journey through intubation.
She remained intubated for 6 days. Apparently, Alex has a very high tolerance for sedatives. It took her being on max doses of Versed, fentanyl, Precedex, propofol and Ativan in order to keep her sedated. At one point her neurologist was concerned about brain death because there was so little brain activity. Due to the intubation, she developed pneumonia, and also had another infection simultaneously. Her fever got dangerously high for several days, but eventually the multiple antibiotics did their thing & she started to improve from there
.
Due to all the IV fluids and medications, Alex’s veins became unusable & she needed a PIC line. I was worried about having another avenue for infection, but the PIC line ended up being a huge help.
Finally, after 6 days, they started to wean her off the sedation so they could extubate. Once she started waking up, things got complicated. She couldn’t feel her legs, she couldn’t move them, & nobody had any idea why. After 2 days, her right leg came back fully, but her left leg was not working. Then the pain started.
It was pain like I’ve never seen anyone experience. My poor daughter, who had been through so much in the past month was now in so much pain that all she could do was silently scream if anything touched her foot. She couldn’t walk. Even with a walker, she couldn’t allow her foot to touch the floor. We kept asking for help in diagnosing and treating whatever this was, but their concern was the seizures, which had started up again & seemed to be triggered by the intense pain she was in.
There is a lot that happened after that, but suffice it to say that nobody could accurately diagnose either her leg or her seizures, so we came home. In total that first hospital stay stretched to 7 weeks in 9 different facilities and more pharmaceuticals than any one person should ever ingest.
We did eventually have another hospitalization at Christmas that finally got an accurate diagnosis of her seizures as being frontal lobe epilepsy. Her doctor thinks it’s related to a bad car accident she had 2 years ago.
She was diagnosed with Complex Regional Pain Syndrome of unknown etiology. We’ve been to a pain management doctor & an orthopedic doctor who was able to do a nerve conduction test to finally discover that Alex’s sciatic nerve was damaged during her intubation. The belief is that her femur had popped out of her hip during one of the seizures, but due the sedation, nobody was aware & she was lying with it like that for a week, causing the damage. She is supposed to be having a nerve stimulator implanted to assist with the pain, but due to COVID-19, we’re having to postpone that. Walking & full recovery is an unknown at this time.
Obviously, Alex can’t live alone now. I’ve moved in with her, along with Maya, to take care of her. I haven’t lived in my own home since October 5th. Alex’s seizures are being managed with multiple medications & she’s down to having 1-2 a week. Some days are better than others. Thankfully, she has no respiratory or cardiac arrest anymore. I’ve watched her have hundreds of seizures over the last 6 months, but I can’t ever get the image out of my head of her lying on the side of I-10 with me trying to remember my CPR skills from 23 years ago. The nightmares are still very vivid.
We’re still in the middle of this. I know there’s more to come. I have no idea when things will return to “normal,” nor what that will look like for us in the future. Whenever this pandemic lets up, we will start the process to raise funds to train a service dog for Alex, in the hopes that she will have some more independence and my other kids can have their mom. A local trainer here will train the dog for $6000, so that’s our next goal.
If you read all the way through this, thank you. I know it’s a lot. For the “too long, didn’t read” crowd, just go hug your loved ones. Life is unpredictable.
Here is our story:
Today I want to wish my oldest daughter a happy birthday. But this birthday is different, because 6 months ago I doubted we would ever see this day together. I have put off writing this story out because, frankly, it's pretty traumatic and difficult to relive. But today seems like as good a day as any. It's very long. I apologize in advance.
On October 5th, I joined my two oldest daughters, Alex & Jackie, on a road trip to Phoenix. The purpose of this trip was to attend a Jonas Brothers concert. Well, that was their purpose. MY purpose was to make sure my girls didn’t destroy each other during the hours locked in the car. "It’s the Jonas Brothers," they said. "It’ll be fun," they said. Narrator: It was NOT fun.
Alex had been diagnosed with epilepsy about 10 months prior. She did verify that the concert was “epilepsy friendly,” but that is apparently a subjective moniker. Alex made it to the last 4 songs in the concert without too much issue. Then I noticed her making some head movements that I had come to recognize as early seizure signs. I asked if she was ok, & she didn’t respond.
We had seats on the floor, but we were in the center of the row, so Alex just started pushing people out of her way & ran toward the open space on the floor. I followed her, & when we got out of the rows she turned to me & said, “This is going to be bad.” Then the seizure started.
She went down. I tried to catch her, but I ended up flying over her & sliding across the floor due to all the confetti. I clambered back to Alex & put my hands under her head to make sure she didn’t hurt herself. The EMTs for the arena came & when she stopped seizing they put her on a gurney & transported her to the medical room. Once there, the paramedics from Phoenix Fire Department came & gave her meds, but she had another seizure. The decision was made to take her to the hospital via ambulance. She had yet another seizure en route. We arrived at Banner University Hospital & Alex had multiple seizures in the ER, so they admitted her.
After 3 days & multiple EEGs, the neurologists there decided that she was safe to travel to get back to her regular neurologist in El Paso. I wasn’t especially comfortable with the idea of an 8 hour drive like that, but they told me just to keep her safe if she seizes & keep going. That turns out to have been a horrible idea.
At about 1am, driving down I-10 in the middle of nowhere, Alex started seizing. Jackie was tasked with making sure Alex didn’t hurt herself during the seizure while I tried to “keep going.” After several minutes of convulsions, Alex just flopped over. That was new. I checked for breath & found that she wasn’t breathing. I felt for a pulse on her neck & we had a pulse, so I was trying to figure out the best place to pull over. As I was pulling over, I lost her pulse. My child had no pulse.
We were just outside of Deming, NM and I had to yank my daughter out of the car & do CPR on the side of the interstate. Jackie was on the phone with 911 dispatch, trying to describe where we were. After several minutes like this, Alex took a big gasp of air & came back. The ambulance finally arrived & we were transported to the Mimbres Memorial Hospital and Nursing Home.
We stayed there for 2 days, trying to get her transported to El Paso so that her neurologist could see her. During our stay in Deming, Alex had numerous seizures where she stopped breathing again. Luckily, no more cardiac arrest. We finally got a transport to El Paso, and Alex was admitted to Providence Memorial Hospital’s ICU.
We stayed at Providence for almost a week, but the EEGs they performed showed no seizure activity. They decided her seizures were psychogenic & decided she should go home & follow up with her neurologist. Well, nothing is ever that simple, is it?
On the way home, she did it again. She flopped over, no breathing, no pulse. Since I was in the city this time, I just raced her to the nearest emergency room. When we arrived at the emergency room at Sierra Providence East, I had to leave Maya (my youngest) in the car with Alex’s lifeless body while I ran in & asked for help. They came out & saw her & things started moving quickly. The nurse was trying to do chest compressions on Alex while she was in the wheelchair being raced to the trauma room. We got in there & the doctor asked a few questions. He realized she had been down for 3-5 minutes at that point. He literally said, “Fuck this! I’m intubating.” So began my daughter’s journey through intubation.
She remained intubated for 6 days. Apparently, Alex has a very high tolerance for sedatives. It took her being on max doses of Versed, fentanyl, Precedex, propofol and Ativan in order to keep her sedated. At one point her neurologist was concerned about brain death because there was so little brain activity. Due to the intubation, she developed pneumonia, and also had another infection simultaneously. Her fever got dangerously high for several days, but eventually the multiple antibiotics did their thing & she started to improve from there
.
Due to all the IV fluids and medications, Alex’s veins became unusable & she needed a PIC line. I was worried about having another avenue for infection, but the PIC line ended up being a huge help.
Finally, after 6 days, they started to wean her off the sedation so they could extubate. Once she started waking up, things got complicated. She couldn’t feel her legs, she couldn’t move them, & nobody had any idea why. After 2 days, her right leg came back fully, but her left leg was not working. Then the pain started.
It was pain like I’ve never seen anyone experience. My poor daughter, who had been through so much in the past month was now in so much pain that all she could do was silently scream if anything touched her foot. She couldn’t walk. Even with a walker, she couldn’t allow her foot to touch the floor. We kept asking for help in diagnosing and treating whatever this was, but their concern was the seizures, which had started up again & seemed to be triggered by the intense pain she was in.
There is a lot that happened after that, but suffice it to say that nobody could accurately diagnose either her leg or her seizures, so we came home. In total that first hospital stay stretched to 7 weeks in 9 different facilities and more pharmaceuticals than any one person should ever ingest.
We did eventually have another hospitalization at Christmas that finally got an accurate diagnosis of her seizures as being frontal lobe epilepsy. Her doctor thinks it’s related to a bad car accident she had 2 years ago.
She was diagnosed with Complex Regional Pain Syndrome of unknown etiology. We’ve been to a pain management doctor & an orthopedic doctor who was able to do a nerve conduction test to finally discover that Alex’s sciatic nerve was damaged during her intubation. The belief is that her femur had popped out of her hip during one of the seizures, but due the sedation, nobody was aware & she was lying with it like that for a week, causing the damage. She is supposed to be having a nerve stimulator implanted to assist with the pain, but due to COVID-19, we’re having to postpone that. Walking & full recovery is an unknown at this time.
Obviously, Alex can’t live alone now. I’ve moved in with her, along with Maya, to take care of her. I haven’t lived in my own home since October 5th. Alex’s seizures are being managed with multiple medications & she’s down to having 1-2 a week. Some days are better than others. Thankfully, she has no respiratory or cardiac arrest anymore. I’ve watched her have hundreds of seizures over the last 6 months, but I can’t ever get the image out of my head of her lying on the side of I-10 with me trying to remember my CPR skills from 23 years ago. The nightmares are still very vivid.
We’re still in the middle of this. I know there’s more to come. I have no idea when things will return to “normal,” nor what that will look like for us in the future. Whenever this pandemic lets up, we will start the process to raise funds to train a service dog for Alex, in the hopes that she will have some more independence and my other kids can have their mom. A local trainer here will train the dog for $6000, so that’s our next goal.
If you read all the way through this, thank you. I know it’s a lot. For the “too long, didn’t read” crowd, just go hug your loved ones. Life is unpredictable.
Organizer and beneficiary
Stephanie Osburn
Organizer
El Paso, TX
Alexandra Whited
Beneficiary