Mandi is scheduled to have her mind controlling helmet EEG hardware installed this Thursday at 11:30 a.m., which she will wear until 11:30 a.m. on Friday.
We are not completely sure what this contraption will look like or work, but I’m hoping it is smaller and lighter than a car battery. I’m keeping my heavy-duty 100′ extension cord handy just in case we need to plug her in. I just hope it doesn’t affect our wireless network or cellular phone reception.
…I can do this all day… 
Met with the neurologist this morning to learn about the results of Mandi’s MRI and EEG. The doctor said the MRI showed the 3 mm. spot in the brain to be a small cyst that he is not concerned about. He said it was not unusual for cysts to exist/form in the brain, but he would like to do another MRI in 6-months as a follow-up.
The EEG didn’t show any signs of seizure activity, but it did show a “slow wave pattern” during one of the tests (the one where she is asked to hyperventilate). Other than that the EEG looked normal. The doctor explained that the lack of seizure activity on this particular EEG doesn’t necessarily mean this kind of activity is not happening at all. Sometimes you have to be looking at the right time to catch things like these, which is why he is suggesting a more thorough test. Mandi’s previous EEG was only 20-minutes long, the minimum duration for a routine EEG, so we are scheduling a 24-hour EEG in order to look at a much broader set of data. For this they will outfit Mandi with all the necessary hardware and send her home wearing it until the next day. Don’t fret, I will take pictures and share
The good news is that the doctor did not see anything on the test results that concerned him, but wants to make sure nothing is being overlooked by doing the 24-hour EEG. The only bad part is the fear of the unknown. There are a lot of strong feelings you are left with after a seizure, and there is certainly a time of recovery that we are all still going through. Mandi is having her worst headaches to date and is constantly worried about having another seizure, something the doctor believes will subside in time. For now all we can do is wait to perform the 2nd EEG, take the necessary medication for the headaches, and be as strong and supportive a family as we can.
We are blessed with wonderful friends who have already done so much for us in so many ways, and I’d like to thank you all for being there when we needed you the most. We appreciate everything everyone has done for us during these past couple of weeks.
As you all probably know by now, the last couple of weeks have been quite chaotic around here. Just when we thought we’d had enough, here comes Mr. Virus to put some salt in that wound.
Larsen has already been sick for the last week, and on antibiotics for a sinus infection, so it was only a matter of time before the rest of us were infected as well.
Tuesday (02/19/08) afternoon I started to feel rather icky, light-headed and unusually cold. When Mandi took my temperature I was running a 102 degree fever. The icky feeling and the OFF/ON fever lasted until the next day, so we went to the MinuteClinic at CVS (what a great concept that is!) to have a flu test. It came back negative, so I was sent off with the usual instructions: “rest and drink plenty of liquids.” Today is Thursday and although I’m feeling better, I can tell I’m not out of the woods just yet.
This morning Mandi woke up congested and coughing, and Landri was a bit on the warm side last night. I sure hope Larsen keeps getting better because he may taking care of all of us real soon.
I’m telling you, things just can’t get much better around here.
This morning Mandi had her EEG and MRI done, but we are pretty sure we’ll have to wait until her doctor’s appointment this coming Friday morning to know the results. We are hoping for a call from the Dr. sometime between now and then, but we are not holding our breath. For now we’ll just have to sit tight for a couple of days and wait.
Mandi is doing OK, albeit a bit tired of the daily headaches she has been experiencing. I have also started to call her Dori (from Nemo) every time she repeats herself.
Tinker Belle Star, a.k.a Belle.
Yesterday was a very sad day around here. Earlier during the week I noticed how large our dog Belle’s tumor had grown, so we made an appointment with the vet to take a look at it; the same vet that removed her tumor almost 2 years ago.
At 13 years old, Belle was no spring-chicken. For the past few weeks we had been noticing her struggle making the step-up transition from the backyard to the house, back pain problems (very common in Beagles), increased vomiting, coughing, and hearing loss. We shared this information with the vet, and Mandi shared her concerns about Belle’s quality of life. The last thing she wanted was to see her dog suffer, and simply keeping things the way they are by pumping Belle with medication was not going to make things any better for anyone.
We have gone through a lot this week and for certain something like this was the last thing we needed. I was resistant to making a decision at that point since I didn’t think any of us were in a good place to make sound and rational decisions, but Mandi felt strongly about not putting Belle through any more grief and/or pain. I didn’t make things any easier for Mandi by questioning her decision over and over again, but it was very important to me to make absolutely certain this decision was not simply emotional, but rational as well. Belle was Mandi’s dog, so it would ultimately be her decision anyway.
Belle was put down to sleep on 2/15/08 at about 6 pm, and she will be deeply missed. I’m the first one to admit she was the dog I loved to hate, but she was a good dog. Make no mistake, she was a huge brat…but she was a very loving dog. I always told Belle she couldn’t be both cute and smart (I tell Mandi the same, but that is a whole other story), and she was definitely very cute. Yes, I shared some choice words with that dog every single morning when she would wake me up with her barking between 5 and 5:30 a.m. (even on the weekends!), and I would yell at her whenever she would try to snatch up food from the table, or made her way into the pantry and ripped open whichever bag she could get her snout in, or continuously barked at her box of doggie treats demanding one, or helped herself to a poo-poo platter (not the same as a pu-pu platter) when she was in the backyard, but even after all of that I’m still going to miss her terribly.
We are now down to one dog, Chispa. She is 12 years old, so it is only a matter of time before we have to go through this again. When that happens there is going to be a long period of time before we even talk about getting another pet.
After last Friday’s event things have been quite “interesting” around here. Mandi is doing well, but neither of us can help but be a bit on the edge after an experience like that. We are constantly thinking when/if it is going to happen again, and concerned for the well-being of both Mandi and Landri. For those reasons Mandi is currently not driving or spending much time alone, as suggested by the ER staff at the hospital. It is a big adjustment, one that we are going to have to learn to deal with since it isn’t changing any time soon.
Last Monday I called the neurologist’s office (the one referred to us by the ER Dr.) and got the earliest appointment possible for Mandi – February 14 (yesterday). In that time Mandi has had severe headaches and is still having some problems with her short term memory. We have had a little fun with that (you know, that whole thing about lemons and lemonade) and I have been combing the web to find a video clip of the SNL “short term memory guy” skit. I’ll find it eventually, I’m sure
Our appointment with the neurologist was your basic Dr. first visit filled with questions and basic tests. The Dr. made sure all the muscles in her body were acting symmetrically(same strength on both sides of the body), checked her reflexes, peripheral vision, eye movement, sensation on different parts of her face, etc. All was well, so there wasn’t anything obviously wrong exposed by those basic tests. To make a potential long story short, we left the Dr’s office not knowing any more about what may be going on with Mandi than we did when we walked in. For that Mandi needs to have an MRI (with and without contrast) and an EEG done. Those tests will give the Dr. the data he needs to better tell what may be going on with Mandi’s, and hopefully find out more about that 3 mm. “something” in her head (as seen in the CT scan done in the ER). Both off these tests will hopefully will be done on Monday. For now Mandi is going to start on some anti-seizure medication, and may have to be on it for a long long time.
Even though Mandi’s diagnostic will have to wait, we did learn some interesting things during our visit. One of the first things the Dr. pointed out was that in the state of Texas you must be seizure-free for 6-months before driving a motor vehicle. I did some searching, and even though I found out there is a law like it, it is specific to epilepsy. I’m not so certain Mandi’s seizure falls under this category though. Any attorney’s out there? Of course, with the “no-driving” came the not holding the baby, no cooking (ugh!), no climbing ladders, etc. He also mentioned not taking a bath by herself, and since I know how much she loves baths I volunteered to be there and watch anytime she wanted to take one. My only request was that she would lather and rinse slowly.
We were also told that statistics show (haven’t been able to find anything about this on the web yet) that 57% of all children with mothers who have seizures have suffered some kind of trauma because of it. There are numerous problems with this figure and the conditions around it, so I’ll keep searching and see if I uncover anything. Regardless of what the percentage is, Mandi is 1-for-1 since she has had 1 seizure and at the moment she was with Landri who did roll out of her lap and onto the floor. Landri is fine, but it is a scary thought nonetheless.
I also got some “tips” on what to do, and not do, if a second seizure were to happen. I already know the shaking, spasms, lack of color, purple lips and no breathing are just normal occurrences during a seizure. That knowledge alone will prevent me from panicking like I did the first time, but I also learned that you should place the person on their side to make sure no fluids collect in their mouth. You also shouldn’t put anything in the patients mouth (the good ol’ spoon in the mouth method) either. Other than that you hold on tight, “enjoy” the ride, and get ready to deal with the state of utter confusion the person will be in after they come to.
We have no shortage of great friends and family, so we definitely do not feel like we are alone or have anybody to turn to. We greatly appreciate all the calls, prayers and offers of help we have received. Thank you!
I will keep you all updated via this blog, so be sure to subscribe to the RRS feed or simply check back sometime next week.
Last night, February 08, 2008, I experience the scariest moment of my entire life.
For the last couple of days we all have had symptoms of the Crud that seems to be going around. The flu is still around as well, but since we all had flu shots this year we were pretty sure that wasn’t it. Friday morning Mandi wasn’t feeling very well, and she let me know there was a possibility I may have to leave work early to pick Larsen up from school. She didn’t feel any better as the day progressed, so I ended up picking up Larsen as planned and kept working from home for the rest of the afternoon.
At about 5:30 p.m. Mandi asked if I could go pick up a plain baked potato from Wendy’s for her. She really hadn’t had anything to eat other than a piece of toast earlier that morning, and a potato was pretty much the only thing she thought she could handle at the moment. I was trying to wrap some work up, so I stuck around the house for a little longer.
By now it was about 6:00 p.m. and I was in the study, and knew Landri was in her room (right across the hall from the study) because I could hear her bedtime music playing. All of a sudden I heard a loud cry, the kind with the urgent undertone that makes you react immediately. I called out Mandi to see if she was in the room with Landri, but did not get an answer. I saw Larsen running out of the room so I got up to see what was the matter. Seeing as the lights in the room were turned on I thought Larsen had woken Landri from her nap. As I ran into the room to check on Landri I came face-to-face with the most disturbing scene I have ever seen.
I saw Landri face down on the floor crying, and Mandi convulsing on the rocking chair, horizontally and stiff as a board. I immediately picked up Landri from the floor and quickly placed her inside a box full of folded clothes so that I could turn my attention to Mandi. I grabbed a hold of Mandi and tried with all my might to get her to snap out of it. There was no response, and I started to lose my cool. I didn’t really know what was causing her to be having a seizure, nor did I really understand enough about seizures to know exactly what to do or what to expect. After what must have been about 10 seconds of me holding and calling Mandi’s name I started to see small bubbles/foam forming between her lips. She had started to lose her color, her lips were starting to turn blue and at that moment I knew this was beyond my control. I sprung for my phone, which happened to be back on my desk, and I quickly dialed 911. By now Larsen had gotten wind of the situation, and seeing me lose my cool got him upset as well.
I was having a very hard time hearing the 911 operator over both Landri and Larsen’s cry, so I had to crank the volume on my phone. At the point I started hearing and talking to the 911 operator Mandi’s seizure was starting to subside, which was the point when I completely lost it. Never having seen a real-life seizure before, I was not ready for what I was about to experience. In case you don’t know: a person having a seizure shakes uncontrollably, almost as if they were being electrocuted, but as that seizure comes to an end the shaking turns into spasms that slowly go away. It is this slowing down that makes it look as if the person is slowly dying, a pretty traumatic experience especially since you end up with a motionless person that has lost their natural color, whose lips have turned purple and is no longer breathing. Not knowing this is the natural progression of a seizure I was convinced I had just watched Mandi leave us, which plays some very nasty tricks with your mind.
You have probably heard how people claim to see their life flash right before their eyes before experiencing a life-threatening situation. For me it was a flash of how our family’s life were going be affected by this event. It felt like my brain had gone into hyperdrive for a second or two, with the ability to process all the possibilities of that scenario in a flash. I’m still pretty amazed by it.
I’m not sure exactly how my conversation with 911 operator was like, but do remember frantically asking for an ambulance immediately, telling her my wife was having a seizure and repeating our home address over and over again. After a few seconds of unresponsiveness Mandi started moving and taking small breaths of air. At this point I started to calm down a bit and was able to more clearly talk to the 911 operator, who was doing her best to ask as many irrelevant questions as possible to get my mind out of “freak-out” mode. I was also able to talk to Larsen down from his upset mode a bit. The operator told me that an ambulance had already been dispatched, so I told Lasen I needed him to open our front door. By now Mandi had opened her eyes, but I could tell she was confused and didn’t know where she was. She tried to get up, but I told her she needed to lay down.
The fire department was the first to arrive, 4 minutes after being dispatched. One of the firemen took Landi in his arms, and another one started talking and further calming Larsen down while I briefed them on what had happened. Mandi was very disoriented, confused and very upset that she wasn’t allowed to move about as she thought she needed to. I later learned, this is normal post-seizure behavior. She wasn’t sure what was going on and at times either didn’t recognize me or was looking right through me, as if I wasn’t even there. It took several minutes for the paramedics and firemen to calm her down enough to get her on the gurney and get her in the ambulance.
I followed the ambulance all the way to the Presbyterian Hospital of Plano. By the time we got to the hospital Mandi had already regained enough sense and was aware of the general situation, even though she didn’t remember what had happened. At the hospital they ran the normal battery of tests (temperature, blood, urine), plus a few others related to her seizure (head CT scan, flu test, pregnancy test and even a spinal tap). Everything came back negative, or normal (a bit low on potassium, but not abnormal), except for a very small (1 – 2 mm.) “something” seen on the CT scan. The Dr. wasn’t too concerned because what they are looking for is major bleeding in the brain, but suggested we followed up with a neurologist about it anyway. Basically, it is a mystery why she had this seizure.
About the only other constant was the headache she had all 9-hours she spent in the emergency room. These headaches are not uncommon during a normal day, so it will be one of the topics discussed when we see the neurologist. We have already setup an appointment with the one referred to us by the hospital, so we’ll see how it all goes.