Devynne had her Invasive EEG today, they drilled three holes the size of a nickle and placed subdural electrode strips on the surface of her brain. They are going to monitor her for a few days. Doc said she could be in the hospital for 1 to 30 days....depending on how long it takes for them to capture the right amount of info they need. But said usually it's only 3-4 days. Doctor said everything went well in surgery. She went in at 0730 and was in recovery at 1030. She's been recovery pretty good. Had a couple of set backs, she's been throwing up everything she eats or drinks. She doesn't have an IV so she really needs to start keeping stuff down.
She looks really good, doesn't look like she just had her skull drilled into :) Will keep you posted on how she's doing. Had a lot of visitors today, it was really nice. She slept through most of it. My boss, Wendy, Mike, Laura and the shirt stopped by. We also ran into one of her teachers who was here visiting another person. My mom is here with us, staying the night to make sure everything stays smooth. Thanks for all the prayers and thoughts!!
Tuesday, January 24, 2012
Monday, January 23, 2012
Night Before Procedure
It's the night before...and I'm starting to get nervous. Mom came in to sit with us tomorrow and keep me sane. Surgery is at 0730 in the morning and should last a couple of hours. I will keep you all posted, please keep us in your prayers. More to post in the next few days.
Tuesday, January 17, 2012
1 Week from her Invasive EEG
So far seems like my mom is the only one that follows my "blog" if I can even call it that. Hopefully people will soon follow suit. Well today is 17 Jan, in 1 week from today my daughter is going in for her invasive EEG monitoring. In 1 week a doctor will look at and touch my daughter's brain. I'm trying really hard to not stress but as most people know (yes, you mom) I am a worrier and I think the worst of everything. I'm trying to remind myself that it's just a procedure and everything is going to be fine!
Here's what's been going on in our world...I started school last night, for the millionth time. I am determined to get my Bachelors before my child does :) I've been at this since 2006, although I have completed my Associates Degree already. Some of you (maybe more in the future) may think that I picked the perfect time to start back, and I'm thinking the same thing you are! Well, thought it last night as I'm sitting in my Accounting class that is scheduled for 5 1/2 hours! Oh, and Accounting...hope that you NEVER have to take it. I know it's only day one but it is kicking my butt! I have to admit that it is an accelerated course, 16 weeks shortened to 8 which in my defense is a little harder. I'm also taking an on-line class, Interpersonal Communications; maybe I will learn how to deal with a menstrating 13 year old :) Hope that doesn't offend any of you...but then again all you have to do is stop reading.
Anywho, so the past 2 weeks I've been fighting a cold and the whole time I'm telling Devynne that she needs to stay out of my face and no drinking after me, "you can't get sick or they will cancel your surgery!" What do you know, this morning she wakes up all stuffy! So what does any good mother do, I run to the drug store and buy her some meds and fill her up with them! Wish us luck!! Post more later, I have reading/homework to do....Good night mom and my hopefully future bloggers.
Here's what's been going on in our world...I started school last night, for the millionth time. I am determined to get my Bachelors before my child does :) I've been at this since 2006, although I have completed my Associates Degree already. Some of you (maybe more in the future) may think that I picked the perfect time to start back, and I'm thinking the same thing you are! Well, thought it last night as I'm sitting in my Accounting class that is scheduled for 5 1/2 hours! Oh, and Accounting...hope that you NEVER have to take it. I know it's only day one but it is kicking my butt! I have to admit that it is an accelerated course, 16 weeks shortened to 8 which in my defense is a little harder. I'm also taking an on-line class, Interpersonal Communications; maybe I will learn how to deal with a menstrating 13 year old :) Hope that doesn't offend any of you...but then again all you have to do is stop reading.
Anywho, so the past 2 weeks I've been fighting a cold and the whole time I'm telling Devynne that she needs to stay out of my face and no drinking after me, "you can't get sick or they will cancel your surgery!" What do you know, this morning she wakes up all stuffy! So what does any good mother do, I run to the drug store and buy her some meds and fill her up with them! Wish us luck!! Post more later, I have reading/homework to do....Good night mom and my hopefully future bloggers.
Sunday, January 8, 2012
New to Blogging
Well here goes, I'm new to this so please bear with me as I figure things out. I wanted to start this blog mostly as a personal diary of how my life is as a single parent with an Epileptic child. Here's my story. My daughter had her first seizure on 25 Dec 2004. Since then things have changed. We managed our lives as she was having seizures every few months. As first I didn't know how I was going to get through life. At that time I was in the military and a month shy of moving to Idaho, further away from friends and family. How could I do this? I am moving to a new state, new base, no friends, no nothing! And a new life style.
As we settled into our new lives things started to look up. We made wonderful friends right off the bat! And we found the most amazing medical team. My daughter had a few seizures for the next couple of years. Her last seizure was 21 Mar 2006. This was also the first one I ever witnessed. And as all of you know, the first one is extremely stressful and scary!! The next two years went by and it was time to talk about what was next in my daughter's medical adventure....removing her from her meds. After all it's been almost 3 years since her last one. Things were going really good, this was September 2008. Christmas morning of that year we had some friends over, my daughter had been asking for a WII and RockBand so Santa was very generous and got it for her. We had such a great time, dancing and singing...then all of the sudden my daughter starts having a Grandmal. Oh, I also forgot to mention that earlier that year I fell and ruptured a disc in my back and was being medically discharged from the military. My daughter continued to have seizures every couple of months. Once again we got settled into our new lives, living in AZ with my parents. This is where our lives really changed. In 2010, a month after I bought my first house (an accomplishment I thought I would never get to), my daughter's epilepsy turned for the worse. Father's day evening after returning home from my parent’s house my daughter started acting really weird, not sure what was going on I rushed her to the ER. She was confused and disoriented, at first the nurse and doctor said she was overdosing on drugs. DRUGS! My daughter was only 10 at the time, how on earth could she being overdosing? I tried to explain that she had seizures and I thought she was having one then. It was a really rough night, they finally took a toxicology panel and found that she didn't have any drugs in her system. They admitted her in ICU where we stayed for a week. She had a few seizures while in, then we were released. From then on she started having seizures (grandmals) once a week. She had several tests to include MRIs, CTScans, PETScans, multiple EEGs, Video EEG and so on. All the time the new doctor we found just kept telling me that she wasn't sure what was going on and why my daughter was getting worse. We started to evaluate her for surgery, you know the Lobectomy. Dr C (don't want to use her whole name) gave us a couple of options, we could go to Ohio to the Mayo Clinic where they have a great Epileptic Clinic or we could to the Internal EEG. Knowing that I didn't have money to travel to Ohio nor the time off from my new job, we opted to go for the Internal EEG. Once I called Dr. C and told her we wanted the EEG she said that she needed to talk to her "council" about this option. A week later she came back and informed us that the "council" said no, she then sent us to Phoenix to the Epilepsy Clinic there and also scheduled us for a Vagus Nerve Stimulator Consultation just in case Phoenix was a flop. Guess what, it was! Anyways, she had the VNS implanted and things got worse! Instead of one seizure she started having two back to back and they were more violent. This was March 2011. I decided to look for a new doctor (I'm leaving alot of crap out, Dr C was a joke!), her new Doc was Dr D. She is amazing, she listens to all of my concerns. She changed up Devynne's (my daughter) medications (for the millionth time). Well during this time things continued to get worse. Now Dev's having Gelastic seizures, these are seizures that cause uncontrollable laughing or crying. My daughter happens to have the laughing ones. Sometimes it's kind of funny but when she's having them every night, 5-15 that last an hour or so; it stops being funny. Here we are today, 8 Jan 2012. My daughter is scheduled for an Invasive EEG, her surgeon will drill three holes, one in her Right, Left and Frontal lobes and place electrodes on the surface of her brain, then monitor her for a week or so. Good news is, she went 65 days without having a seizure...but she had one yesterday, but we are making progress. I'm really scared, at first I just told myself that it's only a procedure but now I'm getting scared.
I hope that I will find people that are going thru the same thing, someone that can relate. I'm an open book so please ask anything you'd like. I'd like to learn from those in the same situation and maybe help those myself. More to post later. Oh and I apologize in advance for rambling :) Thanks for reading.
Allison
As we settled into our new lives things started to look up. We made wonderful friends right off the bat! And we found the most amazing medical team. My daughter had a few seizures for the next couple of years. Her last seizure was 21 Mar 2006. This was also the first one I ever witnessed. And as all of you know, the first one is extremely stressful and scary!! The next two years went by and it was time to talk about what was next in my daughter's medical adventure....removing her from her meds. After all it's been almost 3 years since her last one. Things were going really good, this was September 2008. Christmas morning of that year we had some friends over, my daughter had been asking for a WII and RockBand so Santa was very generous and got it for her. We had such a great time, dancing and singing...then all of the sudden my daughter starts having a Grandmal. Oh, I also forgot to mention that earlier that year I fell and ruptured a disc in my back and was being medically discharged from the military. My daughter continued to have seizures every couple of months. Once again we got settled into our new lives, living in AZ with my parents. This is where our lives really changed. In 2010, a month after I bought my first house (an accomplishment I thought I would never get to), my daughter's epilepsy turned for the worse. Father's day evening after returning home from my parent’s house my daughter started acting really weird, not sure what was going on I rushed her to the ER. She was confused and disoriented, at first the nurse and doctor said she was overdosing on drugs. DRUGS! My daughter was only 10 at the time, how on earth could she being overdosing? I tried to explain that she had seizures and I thought she was having one then. It was a really rough night, they finally took a toxicology panel and found that she didn't have any drugs in her system. They admitted her in ICU where we stayed for a week. She had a few seizures while in, then we were released. From then on she started having seizures (grandmals) once a week. She had several tests to include MRIs, CTScans, PETScans, multiple EEGs, Video EEG and so on. All the time the new doctor we found just kept telling me that she wasn't sure what was going on and why my daughter was getting worse. We started to evaluate her for surgery, you know the Lobectomy. Dr C (don't want to use her whole name) gave us a couple of options, we could go to Ohio to the Mayo Clinic where they have a great Epileptic Clinic or we could to the Internal EEG. Knowing that I didn't have money to travel to Ohio nor the time off from my new job, we opted to go for the Internal EEG. Once I called Dr. C and told her we wanted the EEG she said that she needed to talk to her "council" about this option. A week later she came back and informed us that the "council" said no, she then sent us to Phoenix to the Epilepsy Clinic there and also scheduled us for a Vagus Nerve Stimulator Consultation just in case Phoenix was a flop. Guess what, it was! Anyways, she had the VNS implanted and things got worse! Instead of one seizure she started having two back to back and they were more violent. This was March 2011. I decided to look for a new doctor (I'm leaving alot of crap out, Dr C was a joke!), her new Doc was Dr D. She is amazing, she listens to all of my concerns. She changed up Devynne's (my daughter) medications (for the millionth time). Well during this time things continued to get worse. Now Dev's having Gelastic seizures, these are seizures that cause uncontrollable laughing or crying. My daughter happens to have the laughing ones. Sometimes it's kind of funny but when she's having them every night, 5-15 that last an hour or so; it stops being funny. Here we are today, 8 Jan 2012. My daughter is scheduled for an Invasive EEG, her surgeon will drill three holes, one in her Right, Left and Frontal lobes and place electrodes on the surface of her brain, then monitor her for a week or so. Good news is, she went 65 days without having a seizure...but she had one yesterday, but we are making progress. I'm really scared, at first I just told myself that it's only a procedure but now I'm getting scared.
I hope that I will find people that are going thru the same thing, someone that can relate. I'm an open book so please ask anything you'd like. I'd like to learn from those in the same situation and maybe help those myself. More to post later. Oh and I apologize in advance for rambling :) Thanks for reading.
Allison
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