Shortly after my last post "Waiting for Seizures" where I asked for everyone to once again pray for seizures, I noticed some seizure type waves on Tina's EEG monitor. (We have an EEG monitor in her room that technically is there for the EEG Tech to see what's going on while in her room, but after four trips to the EMU I must admit that I'm starting to become quite adept at reading EEG. I guess if engineering or ministry don't pan out I could always become an EEG Tech.) At any rate about the time I noticed these seizure waves the nurse came in and started asking Tina some questions to gage her responsiveness. Tina didn't feel anything and was able to answer everything - 20 seconds later the waves disappeared.
About an hour later the nurse came back in again and I could again see the seizure activity on the EEG. Again she didn't feel anything and was completely responsive and able to answer all the questions. No deja vu, no adrenaline rush, no racing heart, just a slight tingle in her fingers. This lasted for several minutes and as the seizure began to propagate further into her brain (multiple waves on the EEG now showed seizure activity instead of just one) she began to show the typical convulsive characteristics of a grand mal.
However this time it was very different from her previous grand mal seizures. It wasn't nearly as involved and as we could see the seizure dissipate on the EEG monitor she didn't fall into unconsciousness as she typically does after a grand mal. Tina's timing was excellent this time, first because she had the seizure before sleep deprivation so now we don't have to do sleep deprivation (thanks babe), and second because the neurologist was on the floor and was able to witness the seizure and assess her during and after the seizure. This was very comforting to me.
As it turns out this seizure was not a generalized (grand mal) seizure as it did not propagate to the entire brain but was a simple partial seizure which is strictly localized to a specific region of her brain. In this way it has the same nature as the simple partial seizures that Tina normally has where she has deja vu, racing heart, adrenaline rush, and is fully aware of all that is going on while she's having the seizure. Unfortunately, none of her usual simple partial seizure symptoms where part of this seizure except for the last one. Tina remained fully conscious and aware of the entire seizure even after she started convulsing. This is the first time that Tina hasn't either just had some strange sensations and returned to normal, or lost all consciousness after she started convulsing and woke up half an hour later unsure what had happened. When it was all over she could account for pretty much every detail throughout the seizure. I feel bad that she remembers this.
Even in the midst of this Tina has not lost her her sense of humor. Because this seizure lasted quite a while they decided to give her a dose of an anti-seizure drug that in the past has induced amnesia. She has whole weeks missing from her memory after she's been given this drug. So as they're getting ready to inject her with this drug Tina said quite matter of factly, "well I guess I won't remember the rest of this hospital say." The neurologist had the nurse hold up and asked her what she meant, so I explained how Tina has responded to this drug in the past. In the end the neurologist just had the nurse give her a quarter dose, which should wear off within 4 - 6 hours.
As is pretty typical here in the EMU, after Tina's seizure everyone and their brother sticks their head in the room to get a look, to which Tina must have decided that she should take full advantage of her audience and started cracking jokes with everyone there. Keep in mind she had stopped seizing less than a minute previous. Honestly I can't remember much of what she said but she had everyone laughing. The neurologist (a sweet lady who can't be more than 40) just shook her head, smiled at Tina and told her that she had such an unbelievable spirit.
I think the 1/4 dose of Ativan has finally hit Tina's blood stream because she's sleeping at the moment. We won't know if this is enough information for them to be able to assess what the next step should be, but the really good news is that, preliminarily, it appears that all of her seizures are starting from the same place which is absolutely necessary for surgery to be a viable treatment. I would guess that the epileptologist will want more data if he can get it, so I would imagine that as the days progress between now and Wednesday they will want Tina to have more seizures. For now we are grateful for what God has provided for today.
I am thoroughly convinced that all that is happening down here is unfolding under the watchful eye of my Creator and is a direct result of the prayerful petitions offered on our behalf by so many of you. Please know that God answers prayer, and please keep praying.
Early Easter morning, four and a half years ago, life for our family changed forever. I awoke to the sound of an otherworldly noise and Tina’s body convulsing uncontrollably. That event began us onto a path where we would discover that Tina was suffering from late onset Epilepsy. That path would include long periods of Tina being home-bound and a non-stop roller-coaster of trying to figure out which medications would strike the best balance between controlling her seizures but also limit the debilitating side-effects of chronic fatigue and loss of focus – that effort has only been marginally successful.
On July 14th 2010, our path took another turn when Tina underwent a five week long surgical procedure where doctors at University Hospitals in Cleveland Ohio implanted multiple electrodes into her brain in the hope that this would allow them to locate the spot in her brain that is responsible for her seizures and then surgically remove that spot in an attempt to control her seizures without medication. Unfortunately after 3 surgical attempts to locating this seizure focus, the clock ran out and the risk of continuing this procedure became too great, so they removed all of the electrodes, and sent her home with very little to show for our 5 weeks in the hospital.
When we left Cleveland two summers ago we couldn't imagine that we would go back anytime soon. Those five weeks in the hospital were very disappointing for Tina and difficult for our kids. However, over the course of the last year and a half, Tina's seizures have become progressively more frequent, and medications have become progressively less effective at controlling her seizures. So, after consulting with Tina's neurologists, it is clear that we are in for yet another turn in the path of life.
We will once again be making the trip to University Hospitals in Cleveland, and on Wednesday January 11th, Tina will once again undergo the same procedure to implant electrodes in her brain to monitor seizure activity in the hope that they can determine the physical location of her seizures and surgically remove it.
This is not a path that we went looking for nor did we anticipate how sharply our lives would change literally over night when four and a half years ago these seizures began. There have been days when we have wondered as to why these things were happening and what God was up to in this. What we have learned is best summed up by the Apostle Paul in his letter to the church at Rome where he said that the paths that God lays out for us are "beyond tracing out." We may not understand this path or where it’s leading us, but what we do know is that we would rather follow God’s untraceable path than to follow any path we could lay out for ourselves. This blog is our attempt to bring others along with us as we walk along God’s untraceable path.
On July 14th 2010, our path took another turn when Tina underwent a five week long surgical procedure where doctors at University Hospitals in Cleveland Ohio implanted multiple electrodes into her brain in the hope that this would allow them to locate the spot in her brain that is responsible for her seizures and then surgically remove that spot in an attempt to control her seizures without medication. Unfortunately after 3 surgical attempts to locating this seizure focus, the clock ran out and the risk of continuing this procedure became too great, so they removed all of the electrodes, and sent her home with very little to show for our 5 weeks in the hospital.
When we left Cleveland two summers ago we couldn't imagine that we would go back anytime soon. Those five weeks in the hospital were very disappointing for Tina and difficult for our kids. However, over the course of the last year and a half, Tina's seizures have become progressively more frequent, and medications have become progressively less effective at controlling her seizures. So, after consulting with Tina's neurologists, it is clear that we are in for yet another turn in the path of life.
We will once again be making the trip to University Hospitals in Cleveland, and on Wednesday January 11th, Tina will once again undergo the same procedure to implant electrodes in her brain to monitor seizure activity in the hope that they can determine the physical location of her seizures and surgically remove it.
This is not a path that we went looking for nor did we anticipate how sharply our lives would change literally over night when four and a half years ago these seizures began. There have been days when we have wondered as to why these things were happening and what God was up to in this. What we have learned is best summed up by the Apostle Paul in his letter to the church at Rome where he said that the paths that God lays out for us are "beyond tracing out." We may not understand this path or where it’s leading us, but what we do know is that we would rather follow God’s untraceable path than to follow any path we could lay out for ourselves. This blog is our attempt to bring others along with us as we walk along God’s untraceable path.
6 comments:
Hey dude. We are so inspired by yours and Tinas good attitudes and faith. So glad to hear that it sounds like they are coming from the same spot. Tell Tina to keep up the good seizure work and maybe you'll actually be able to sleep the rest of the week. We love you guys.
Good Job Tina!!!! Whooo Hoooo!!
I am so glad that you will be able to sleep tonight! I find that husbands are much nicer if they get their sleep!
Matt - Your blog has been an inspiration. Thank you for keeping us all at home aware of what is going on. And, your words on prayer and the reminders about our God ... well, let's just say that we are encouraged as well.
Big hugs to you!
So glad for the way this day has gone for you. Tina is amazing!! And for the neuroligist to be there, no mistake our God is in control. Love you both.
Matt~ thank you for keeping up your posts, we are following along and praying for the both of you.
Tina~ you are a trooper!
Logan says he loves you soooo much and misses you!
Love you, Dan and Jennifer
Don't know if you got our text last night. If not, we wanted to let you know that our friends at camp with us prayed over Mike for his sister last night! They have been waiting all day to see what God was gonna do! ;) Prayers were answered! PTL! We love you both!
Isn't God Great!!Praying hard. Aunt Barb
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