Dravet strikes again! This past Wednesday, Olivia had a status seizure. It started during her bath a little bit before 5p. Just as her nurse began rinsing the shampoo out of her hair, she went limp like a ragdoll. We quickly jumped into emergency mode, giving the rescue drug, applying oxygen and suction. This time was complicated by the fact that she was right out of the tub. We had to get her dressed in the midst of all this chaos. I had made the decision after the last status seizure to avoid 911 if at all possible. We have had so many bad EMSA experiences that I truly feel they are a detriment to us. So after administering the first dose of rescue med and getting her quickly dressed, we made a mad dash to the car. The nurse sat in the back holding Olivia, keeping the oxygen on her, and we gave the second dose of rescue med before leaving the driveway.
It was rush hour traffic. I drove like a machine. I put my flashers on and just laid on the horn the whole time. If I came up behind a car I would honk and honk and honk continuously while waving my arm for them to get over. Thankfully, this worked on most cars we encountered. It was like a scene out of movie. An extremely surreal experience.
We made it to the emergency entrance, ran up to the desk shouting "status epilepticus," and our nurse said, "open the door, NOW!" So, they did. They got us right back in to a room and started assessing the situation. We made it from the start of the seizure to Olivia laying on a bed in the ER in 15 mins!! We have NEVER made that kind of time when EMSA was involved. It just confirmed our suspicion that, when the circumstances allow, we can do a better job than EMSA has.
Once we got her into the ER, it was a complicated situation just like last time. The seizure type she was experiencing was difficult to define as well as difficult to determine if it had stopped. She wasn't having a typical Grand Mal (general tonic-clonic) seizure where the body is convulsing. Those are a lot easier to recognize as well as easier to tell when they have stopped. If the body stops jerking, you can assume the seizure has pretty much ended. No, this one didn't involve much jerking at all. The ER doctor told me we would pretty much have to have an EEG to confirm whether she was still seizing or not. If we don't know she is seizing or not, then how do we know exactly what to do next?? Well...we don't! So, she got loaded with SO much Attivan and Versed that they had to intubate her to protect her airway. The more of that type of med a person gets, the more likely it is that they will stop breathing on their own. Being intubated is a risky thing, especially for little ones. And, once they are intubated it is hard to get the docs to extubate (remove the tube). So, just like the last two times she was intubated, she fought the tube and wanted to breath on her own. But, they just wanted to keep her heavily sedated in order to keep the tube in. It is a horrible situation. They have to tube her because they have given her so much medication, but they have to keep giving her even MORE medication to keep the tube in. Arrrgh.
Thankfully, this time and last time, the PICU (pediatric intensive care unit) doctor was not afraid to pull the tube as soon as we got up to his floor. Oh how I wish we could just skip the ER and go straight to PICU. You would think the ER is the place to be in an emergency, but I do not necessarily agree---same as I do not agree that EMSA is any help to us in an emergency. My girl has such a rare condition that generalized docs are often lost. This puts so much pressure on me to make decisions regarding her medical care with little to no helpful input from the doctors at hand. What if I make the WRONG decision? How do I live with that? I cannot express the heaviness of these situations. My shoulders strain under the mantle of this responsibility. But, let me say that I am more equipped today to handle it than I was a year ago, even 6 months ago. I have worked hard to learn and understand as much about Olivia as I can. I do not turn away from the challenge. I grit my teeth and burrow through. I do this because there is no other option. I will not let my ignorance or inexperience cause her to suffer if I can help it in any way. I stretch my body and brain beyond the limits, so that she has the best possible chance to survive, to live a quality life. I am not special in any way. I am not superhero strong. I am a mother, plain and simple.
Our PICU stay was very calm this time. Olivia actually slept the entire night. We had the best in-patient nurse we have EVER had, so I was able to sleep a couple hours as well. She woke up bright and early calling for me, asking for high five. Haha. She was still able to walk, though she was wobbly. She did (and still does) have an upper respiratory virus--which almost certainly caused the seizure--so she didn't feel great but was still in decent spirits. We were discharged before noon. Olivia has been doing well since we've been home. She is still fighting this virus, so she tires easily and is battling a lot of congestion. But, it does seems to be on its way out.
The neuro recommended an increase in one of her seizure meds this time, and I have decided to allow it. It has been over a year since I have allowed a med increase, so I think it is probably time now. In the last couple weeks her daily seizures have increased almost threefold some days. Hopefully, this increase will bring it back down to her baseline of about 25 seizures a day or even less.
The main thing affected by this last big seizure seems to be her speech. She has been doing a lot of babbling mixed with some words, but she has also been sort of making up words that we haven't heard before. Just today, it seems to be improving, so that is very good news. Her ability to regain lost ground always amazes me. My biggest hope is that this always continues.
Sorry this is so long, but I had a lot to say I suppose. :)
Life in this moment is...two steps forward and 1-1/2 steps back, so we are still gaining ground!
Tuesday, November 15, 2011
Thursday, November 3, 2011
Well, figured I should show my blog some attention, since July was my last post. We are finally into fall weather here, and that is a huge thing for us. Olivia can finally move freely about indoors and out---her preference being outside, of course. She tolerated the absurd heat of this summer far better than I could have imagined she would. Her seizure activity overall has been decreasing, or perhaps it's better to say it has been stabilizing. She has been the same happy girl as always, enjoying every drop of life. Her beautiful spirit is one of the greatest gifts I have ever been given. It continues to inspire me to keep trying to be the best person I can be.
But right now, I would like to tell you the results from her recent 48-hour, in-home video EEG. First off, let me say how much better it was to do a continual test like this in our home as opposed to in a hospital. It is a hard test to do, but at least she was in her comfortable, familiar environment with many of her usual activities to keep her occupied. I suppose it's because she is getting older, but she was so much more cooperative and tolerant of wearing all the electrodes glued to her head this time than the last time (which was done last summer, over a year ago). So, the main objective of a test like this is for the parent/caregiver to continually observe the patient and keep an extensive log of all known or suspected seizure activity. The electrodes are hooked to a box that has a button to push at or near the onset of any SZ activity. She wears a little backpack that holds this box.
I don't even know how many pages long our log was this time. I believe it was around 8. Even though that makes more work for the doctor as each event must be analyzed, the docs far prefer "too many" button pushes than too few. I learned the hard lesson last summer that too few button pushes leave too many unanswered questions. So we button pushed like crazy! :) And, our doctor was very glad. Olivia had quite a few seizures during the test (all very brief absence type), and the doctor estimated that Olivia has at least 25 a day. While that sounds like a lot, for her condition it is actually quite good. The fact that she is able to continue developing pretty much normally in spite of these seizures is a key point. It let's us know that we need to just keep doing what we are doing.
Olivia also recently had a follow-up sleep study, and it came back completely normal! No seizure activity was detected and no true apnea episodes. Her previous study (before her tonsils were removed) showed mild to moderate apnea, so we are very pleased with this normal study!
About a month ago, Olivia had a status seizure while we were at the zoo. It landed her in the PICU overnight, and they did have to intubate her. She has recovered very well, and I am so thankful for that. Those kinds of events are ALWAYS very traumatic, no matter how many times we go thru it.
I will try to update again soon! Just wanted to get everyone caught up on some of the recent happenings since my last post.
Love to you all!
But right now, I would like to tell you the results from her recent 48-hour, in-home video EEG. First off, let me say how much better it was to do a continual test like this in our home as opposed to in a hospital. It is a hard test to do, but at least she was in her comfortable, familiar environment with many of her usual activities to keep her occupied. I suppose it's because she is getting older, but she was so much more cooperative and tolerant of wearing all the electrodes glued to her head this time than the last time (which was done last summer, over a year ago). So, the main objective of a test like this is for the parent/caregiver to continually observe the patient and keep an extensive log of all known or suspected seizure activity. The electrodes are hooked to a box that has a button to push at or near the onset of any SZ activity. She wears a little backpack that holds this box.
I don't even know how many pages long our log was this time. I believe it was around 8. Even though that makes more work for the doctor as each event must be analyzed, the docs far prefer "too many" button pushes than too few. I learned the hard lesson last summer that too few button pushes leave too many unanswered questions. So we button pushed like crazy! :) And, our doctor was very glad. Olivia had quite a few seizures during the test (all very brief absence type), and the doctor estimated that Olivia has at least 25 a day. While that sounds like a lot, for her condition it is actually quite good. The fact that she is able to continue developing pretty much normally in spite of these seizures is a key point. It let's us know that we need to just keep doing what we are doing.
Olivia also recently had a follow-up sleep study, and it came back completely normal! No seizure activity was detected and no true apnea episodes. Her previous study (before her tonsils were removed) showed mild to moderate apnea, so we are very pleased with this normal study!
About a month ago, Olivia had a status seizure while we were at the zoo. It landed her in the PICU overnight, and they did have to intubate her. She has recovered very well, and I am so thankful for that. Those kinds of events are ALWAYS very traumatic, no matter how many times we go thru it.
I will try to update again soon! Just wanted to get everyone caught up on some of the recent happenings since my last post.
Love to you all!
Tuesday, July 5, 2011
Contemplation Confusion
You ever find yourself in the midst of mental/emotional turmoil and not know how you got there? Find yourself perseverating on intense thoughts or feelings beyond your control? Yeah.....me either. Ok, just kidding. Of COURSE, my answer is "yessssss indeed!" It's not new for me, really. I have always been a perseverator, over-thinker, introspection extraordinaire---call it what you want; just means my brain won't SHUT UP or shut down, sometimes. Lately, though, I have found my brain doing more of a quiet, constant churning. Not the usual shouting at me--where I must really bite into the thoughts that provoke me and conquer them. Nope, my thoughts are playing hard to get with me, and I would like to know why. Here are some theories I have come up with...(they aren't really worked out, so bear with the rough draft nature). It could just be the usual, run-of-the-mill stress that plagues my every breathing second--awake or asleep. Perhaps, it is the continual evolution of Olivia's condition? I find it interesting to be living out in real-time what I have only read about in regard to Dravet. Just like almost anything, when it really goes down in life, it isn't quite the same/not how you thought it would be when you imagined it or read about it. You can read all about a roller coaster and what it's like, but until you actually get ON one, you don't exactly know how it feels.
I have never had a kid before. I barely knew any children at all, frankly. I hardly knew anyone with special needs in my past life. I have never known a cherub-of-a-person like Olivia. I have never had to KEEP someone ALIVE. Ever. Let alone, constantly. I don't think I have this processed, yet. I don't know how to process it any faster. I don't think I or anyone actually can. In the same way I can't levitate myself to...well anywhere...I can't levitate my psyche to a more "processed" place just because I wish it to be so.
It's better. I'm better. Things are certainly BETTER. No joke. When I look back to the spring of 2010---geez louise!! Life is on-another-planet better. But it's all still weird and uncharted. It's unnerving.
Have you ever worn a pair of MBT shoes? Or worked out on one of those exercise balls cut in half thingys? I feel like that all the time. Always looking for my balance, some moments more off than others.
I have no idea what this blog post is really trying to say. I just know I have things swirling in my brain that I can't quite make out, yet. Like when you are hungry but don't know what for---but you know it's something specific.
If I figure it out, I will let you know.
Love--H
I have never had a kid before. I barely knew any children at all, frankly. I hardly knew anyone with special needs in my past life. I have never known a cherub-of-a-person like Olivia. I have never had to KEEP someone ALIVE. Ever. Let alone, constantly. I don't think I have this processed, yet. I don't know how to process it any faster. I don't think I or anyone actually can. In the same way I can't levitate myself to...well anywhere...I can't levitate my psyche to a more "processed" place just because I wish it to be so.
It's better. I'm better. Things are certainly BETTER. No joke. When I look back to the spring of 2010---geez louise!! Life is on-another-planet better. But it's all still weird and uncharted. It's unnerving.
Have you ever worn a pair of MBT shoes? Or worked out on one of those exercise balls cut in half thingys? I feel like that all the time. Always looking for my balance, some moments more off than others.
I have no idea what this blog post is really trying to say. I just know I have things swirling in my brain that I can't quite make out, yet. Like when you are hungry but don't know what for---but you know it's something specific.
If I figure it out, I will let you know.
Love--H
Wednesday, June 8, 2011
SPECIAL REPORT: VERY Exciting News!!!
Olivia has been approved for a grant through the Dravet Syndrome Foundation that will provide her with a Coolsport Cooling Vest and an Emfit movement/seizure monitor!!!! This is a huge, awesome, amazing, wonderful, LIFE-CHANGING gift!! http://www.dravetfoundation.org/pag.html
The Coolsport Vest arrived today and the Emfit Monitor is on its way. The vest is the best one available to help her endure the too-hot temps of summer. Some days are too hot for Olivia to even go outside at all (as the heat is a seizure trigger) and having this vest will allow her more freedom. This vest is not likely to be covered by insurance and costs $130 before shipping. http://www.coolsport.net/index2.html
The Emfit is a monitor for her bed that will detect seizure movements or if she escapes the bed. Olivia is at great risk for SUDEP and nocturnal seizures. This monitor will afford me more peace of mind at night as it will be able to detect and alarm during seizures that I could otherwise sleep through. This monitor is NOT covered by insurance, and it costs at least $600 before shipping. http://www.emfit.com/en/care/products_care/movement-monitor/
Through this amazing grant program, The Dravet Syndrome Foundation is providing these two LIFE-CHANGING items to Olivia, FREE. They are able to provide grants such as this through the generosity of donations acquired either directly or through fundraising events. I strongly encourage you to donate, if at all possible, any amount, because it will go toward helping change the lives of other sweet kiddos like Olivia. There was NO OTHER way we were going to get these items as funds are so limited for us. This is truly a blessing I could never say "Thank you" enough times for.
Please visit The Dravet Syndrome Foundation at http://www.dravetfoundation.org/, to see the amazing things they are doing and how you can join them!!
My heart is SO full of love and gratitude!
-Hilary
The Coolsport Vest arrived today and the Emfit Monitor is on its way. The vest is the best one available to help her endure the too-hot temps of summer. Some days are too hot for Olivia to even go outside at all (as the heat is a seizure trigger) and having this vest will allow her more freedom. This vest is not likely to be covered by insurance and costs $130 before shipping. http://www.coolsport.net/index2.html
The Emfit is a monitor for her bed that will detect seizure movements or if she escapes the bed. Olivia is at great risk for SUDEP and nocturnal seizures. This monitor will afford me more peace of mind at night as it will be able to detect and alarm during seizures that I could otherwise sleep through. This monitor is NOT covered by insurance, and it costs at least $600 before shipping. http://www.emfit.com/en/care/products_care/movement-monitor/
Through this amazing grant program, The Dravet Syndrome Foundation is providing these two LIFE-CHANGING items to Olivia, FREE. They are able to provide grants such as this through the generosity of donations acquired either directly or through fundraising events. I strongly encourage you to donate, if at all possible, any amount, because it will go toward helping change the lives of other sweet kiddos like Olivia. There was NO OTHER way we were going to get these items as funds are so limited for us. This is truly a blessing I could never say "Thank you" enough times for.
Please visit The Dravet Syndrome Foundation at http://www.dravetfoundation.org/, to see the amazing things they are doing and how you can join them!!
My heart is SO full of love and gratitude!
-Hilary
Monday, June 6, 2011
Summer, Summer, Summertime! :o/
Summertime temps are definitely here in OKC! Dravet causes Olivia to be extremely heat/light sensitive. Some days/times are better than others, but we are certainly seeing the effects of summer. Just about any time she walks outside, she has a brief seizure. However, she did have one the other evening that was not brief, and we ended up having to call the ambulance. She managed to avoid the hospital, thankfully. She had been playing outside for a little while and was just getting too active--Bam!--I looked away for a second and when I looked back, she was down on the ground seizing. She did play outside yesterday for quite awhile in her baby pool and seemed to do quite well. The only catch was her nap afterwards---it was four hours long! And, it was only interrupted b/c someone rang our doorbell. So, it looks like even if she doesn't obviously seize in the heat/light, it is certainly wearing her out. We are going to continue making the most of the early hours of each day and getting her out while we can.
In other news, it's almost her 2nd birthday!!!! She turns the big TWO on 6/13. We are having a little party here at the house. I waited so late to get things planned that it might just be us here with a cake and some presents, but at least she will LOVE her presents. I can't wait to give them to her. She has a Wish List on Amazon.com, under the email: hray75@yahoo.com.
In order to deal with her increased seizure activity, we have finally increased her medication a bit. She hasn't had an increase since last fall, which is VERY good! But, summer carries such extreme triggers that it is apparent her previous dosage will not safely get her through. So, we started the new dose a few days ago. It usually takes a week or two for the side effects to go away when we do this. In the meantime, she has been quite a handful---more than usual!
I am glad to finally be out of cold/flu season even in spite of the difficulties of summer temps. Olivia still must be very protected from illness (as always--this will never change for the rest of her life), but it has been a great relief that not as many illnesses are swirling around the population. I tell you the cold/flu season will make you a bonifide germa-phobe when you have a compromised child. So, I am glad to get a little break from the extreme anxiety of that issue.
We are absolutely loving our nurse!! She has been an amazing help. The agency is working hard to find us a second nurse, so we can get our full approved hours. Please pray that the right person comes along to fill that position for us.
Well I gotta go. I am SO tired. Olivia got me up at 6:00 this morning. :o/ So, I am already ready to get back in bed!
Much love, -H
****Addendum: We ended up not going through with the med increase (Keppra), b/c she wasn't getting any obvious benefit from it, yet she was experiencing too many negative side effects. It was decided to go back to her previous dose and just hold steady there.
In other news, it's almost her 2nd birthday!!!! She turns the big TWO on 6/13. We are having a little party here at the house. I waited so late to get things planned that it might just be us here with a cake and some presents, but at least she will LOVE her presents. I can't wait to give them to her. She has a Wish List on Amazon.com, under the email: hray75@yahoo.com.
In order to deal with her increased seizure activity, we have finally increased her medication a bit. She hasn't had an increase since last fall, which is VERY good! But, summer carries such extreme triggers that it is apparent her previous dosage will not safely get her through. So, we started the new dose a few days ago. It usually takes a week or two for the side effects to go away when we do this. In the meantime, she has been quite a handful---more than usual!
I am glad to finally be out of cold/flu season even in spite of the difficulties of summer temps. Olivia still must be very protected from illness (as always--this will never change for the rest of her life), but it has been a great relief that not as many illnesses are swirling around the population. I tell you the cold/flu season will make you a bonifide germa-phobe when you have a compromised child. So, I am glad to get a little break from the extreme anxiety of that issue.
We are absolutely loving our nurse!! She has been an amazing help. The agency is working hard to find us a second nurse, so we can get our full approved hours. Please pray that the right person comes along to fill that position for us.
Well I gotta go. I am SO tired. Olivia got me up at 6:00 this morning. :o/ So, I am already ready to get back in bed!
Much love, -H
****Addendum: We ended up not going through with the med increase (Keppra), b/c she wasn't getting any obvious benefit from it, yet she was experiencing too many negative side effects. It was decided to go back to her previous dose and just hold steady there.
Tuesday, May 17, 2011
Okay!!
Our life at this moment is...changing! We completed the nerve-racking process of being approved for home-health nursing. I got the call yesterday from the home health agency that we had been approved. I had been waiting on pins and needles, and I knew I would be emotional when I got the decision (approved or denied) but when she told me we were approved I literally fell to my knees right in the living room and began to weep. I couldn't even hear her talking anymore. I just thanked her and said goodbye. Ha. (I called her a little while later to have her repeat everything she said after "you've been approved!") Olivia wasn't quite sure what was going on. She doesn't really understand emotions other than the happy, loving ones. She generally laughs or just stares if someone gets angry, sad or scared, etc. Although, I do have to say, she is sloooowly starting to develop a bit in this area and that is very exciting for me. She responded to me crying by coming over and patting me on the back and even asked me, "Okay?". She kept switching sides, too. Patting me on one side then walking to my other side and patting me on that side. Then I gathered myself enough to realize I needed to help her process this moment more than I needed to experience the moment. So, I turned to her and smiled big and said happily that Mommy was VERY ok. And, Mommy was crying very happy tears. Then, I added some clapping and Yays, things that tell Olivia it's a happy thing. She immediately smiled great big and threw herself onto me in big, tight hug. So, we sat there hugging and laughing and me still weeping and Olivia still patting me and saying, "Okay!" Yes, Olivia, Mommy is SO very Okay!
And, now with this amazing turn of events, the nursing, Mommy will get to be even more Okay. I can't believe I am not going to have to do this alone anymore. I am in shock. I have had to push my body and mind so far in the past year that I thought surely both would snap, but they did NOT. Praise God, they did NOT. There is so much work to be done with and for Olivia and really tough days ahead. This nursing service seems to be coming at a really perfect time.
My mind is just swimming with all the things going on, but as usual, I can only seem to handle tiny updates at a time. I'm sorry about that!
I do want to ask for some specific prayers for sweet Olivia. She will most likely be having 2 more procedures/surgeries within the next 60 days or even less. Her hearing is still very, very low, so she will almost surely be getting tubes placed in her ears. Right now, she hears everything like she is underwater. Pretty awful and extra awful when you're trying to learn a language, so we will be taking care of that sooner than later. The other issue is far more complex. She suffers from sleep apnea, both obstructive (something literally obstructing the airway and stopping breathing) and central (the brain is "forgetting" to breathe). There is nothing you can do to fix the central apnea, but there are possible fixes to obstructive apnea. That is, IF you know what the obstruction is. Our problem is we don't know what exactly is causing her obstruction. We (the docs and I--not me, myself and I--ha) believe it is ultimately tied to her low muscle tone issue--just like SO many of her other problems. She will need to have an exploratory procedure done where they watch her throat in action while she sleeps. Please pray that all goes smoothly and that we find the proper direction for her care in this matter. Olivia having a compromised airway is a huge source of worry for me.
Well, I did say this was going to be short, didn't I?? I guess I got a second wind or something. :o)
I hope this moment finds each of you doing/feeling well, and I hope you can feel Olivia giving you a virtual pat on the back and hug around the neck.
All my love,
-H
PS I am waaaay too tired to edit this, so forgive all spelling errors and missing words. Just use your imagination. :o)
And, now with this amazing turn of events, the nursing, Mommy will get to be even more Okay. I can't believe I am not going to have to do this alone anymore. I am in shock. I have had to push my body and mind so far in the past year that I thought surely both would snap, but they did NOT. Praise God, they did NOT. There is so much work to be done with and for Olivia and really tough days ahead. This nursing service seems to be coming at a really perfect time.
My mind is just swimming with all the things going on, but as usual, I can only seem to handle tiny updates at a time. I'm sorry about that!
I do want to ask for some specific prayers for sweet Olivia. She will most likely be having 2 more procedures/surgeries within the next 60 days or even less. Her hearing is still very, very low, so she will almost surely be getting tubes placed in her ears. Right now, she hears everything like she is underwater. Pretty awful and extra awful when you're trying to learn a language, so we will be taking care of that sooner than later. The other issue is far more complex. She suffers from sleep apnea, both obstructive (something literally obstructing the airway and stopping breathing) and central (the brain is "forgetting" to breathe). There is nothing you can do to fix the central apnea, but there are possible fixes to obstructive apnea. That is, IF you know what the obstruction is. Our problem is we don't know what exactly is causing her obstruction. We (the docs and I--not me, myself and I--ha) believe it is ultimately tied to her low muscle tone issue--just like SO many of her other problems. She will need to have an exploratory procedure done where they watch her throat in action while she sleeps. Please pray that all goes smoothly and that we find the proper direction for her care in this matter. Olivia having a compromised airway is a huge source of worry for me.
Well, I did say this was going to be short, didn't I?? I guess I got a second wind or something. :o)
I hope this moment finds each of you doing/feeling well, and I hope you can feel Olivia giving you a virtual pat on the back and hug around the neck.
All my love,
-H
PS I am waaaay too tired to edit this, so forgive all spelling errors and missing words. Just use your imagination. :o)
Sunday, May 8, 2011
Mother's Day!
To my Olivia: Today is Mother's Day, sweet girl, and I am so incredibly lucky to be YOUR mother. I feel that way every single day. I absolutely love it when you give me hugs and pat me on the back while we embrace. I love your sweet little voice, especially when say such words of kindness like "thank you" and "good day!" but extra-specially when you say Mommeeeee! :) I cherish your laugh!! And, you are SO funny. I never knew you would have such a sense of humor so young. You genuinely crack me up. We certainly need our laughs, because it's true, sometimes our days are pretty tough. But, you are tougher; stronger than anyone I've ever known. You have shown me what real strength is. You are teaching me what it means to persevere.
My dear, sweet Olivia, to be your mother and get to love and guide you every day is the greatest gift I have or ever will be given. I cherish every moment up to this point, and I promise to continue to linger in our hugs and in our bouts of the giggles, because all I have is our life.....at this moment.
All my love forever and ever,
Mommy
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