It has been a rough day. I think we both woke up feeling a bit on the edge emotionally. Once again the seizure that was induced this morning doesn't move us any closer to surgery - it doesn't move us any further away, but not any closer either.
Shortly after Tina's seizure this morning her IV quit working. One of the biggest issues Tina has had in this whole thing has been with her IV. She has bad veins to begin with but the antibiotic they've been giving her through her IV tends to break down her veins and causes them to "blow out." After two and a half weeks her arms look like a junkie and it's impossible to find a vein that works. She has yet to get an IV that hasn't required at least 3 tries and the one that quit working this morning required that they stick her nine 9 times before they finally got one to stay. They worked on getting another IV in for about 3 hours this afternoon. They called 3 different people and each tried 3 or 4 times before giving up. In the end they decided to put a central line in directly to a major artery just above her heart. This was not fun for Tina and she is a bit sore from it, but at least she should be done with IVs for the rest of our vacation.
We are definitely getting pretty tired of this whole thing and are ready to be done, so we've decided that we're going to give sleep deprivation another shot tonight. It hasn't been ordered, so the nurses won't run in here and wake her up if she falls asleep, but we're willing to give it a shot and see what happens. Please pray for endurance and that Tina will have a seizure.
For all you Facebook people you can all take shifts chatting with Tina throughout the night/morning to keep her mind occupied.
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.
7 comments:
Oh,sorry it has been such a rough day! I used to be one of those mean IV starting nurses and I am so sorry you had so many pokes. I have been praying every time you come to mind today that you will have "helpful" seizures, hang in there, don't get yourself so sleep deprived that you can't deal with the emotional roller coaster and the stress of the situation. Praying that you will remain strong and that God will show them right where they need to work on. Sally Wetters
Dad and I are so sorry you have to go through this! Of course we are praying that it all will accomplish what it needs to for your final surgery. It was good to be with you. I am glad you finally have a central line, it will make things much easier for you and them. Praying for seizures. love mom and dad L.
Praying even now..
Pray for you tonight:):) Love ya
Shelly
Just for the record she actually has a PIC line, not a central line. I guess there's a difference but you couldn't prove it by me. - Matt
We wish we could take some of the disappointment and pain! Our love and prayers go out to you both!!!! May this be the day they can pinpoint the area!
George & "Cronk"
We are praying and praying. Let us know when the "helpful" seizures come. Aunt Barb
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