Hospital expenses, medicine, help home
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Katie wrote this for me to post as I know many people want to help. She has a hard time doing this so this is something I wanted to do for her.
First and foremost I want to thank ALL of you who for keeping James in your thoughts and prayers, they were needed and very much felt.
Let me begin by saying this is one of the hardest things to do. Our children are fortunate enough to stay with my husbands parents for the summer, in NC. My husband's and my plan is to work all summer long.
Sunday, June 9th 2019, we got a call from Dan's mom, Conni Futrelle, around 6:45 am, she made it clear from the start that James was fine and that he had a seizure around 3am that morning. About 20 minutes later I received a call from a doctor and she informed us of what had happened and said James' seizure lasted around 30 minutes. She had awoke to the sounds of James seizing and by that point James had already vomited and I believe released what ever was in his body, the call to 911 was made and finally connected after about the 4th try, at this point James had bit, as hard as his body would allow, into his tongue he also began to foam (not sure if that's accurate) at the mouth, 25 to 30 minutes later EMS showed up, worked on him for what I assume was 10 to 15 minutes before the decision was made to transport him to Onslow, his siezure continued until they reach the hospital, where his fever spiked at 105. They injected him 3 or 4 times with a seizure reversal medicine but quickly had to reverse those affects or he would overdose.
James was flighted to Vidant Medical Center in Greenville later Sunday morning. During this time Dan and I were in full panic and scrambling on how to get to our baby that's over 1200 miles away. The information they originally heard was that James was unresponsive, this would had been around 7am that morning, so the ultimate fear set upon us. When we got to James later that night he was asleep, the next day we got an inconclusive EEG reading and then later an MRI.
This morning we got the results from the MRI, James' left temporal lobe is swollen from the seizure as expected, but in that is where the monster lives. But there is also a mark on the left frontal lobe that came from a blood clot due to the Factor 5 pregnancy and also probably what cause his twin to not make the extent of the pregnancy. After 7 years of questions and gut feelings we finally got answers, James has MTS Epilepsy, which is the name of the monter in his temporal lobe. And all those times of him throwing up in the middle of the night and sleeping through it are now chalked up to him have seizures and none of us being none the wiser. His bloody noses are from a constant sinus infection, both of these diagnosis will have to be medicated for the rest of his life. Again our entire family is so thankful for all the thoughts and prayers and the offered help from family and friends, we really found out that there is so much light in seemingly dark places. Dan and myself are extremely blessed and so thankful that all of our questions have answers to them.
Symptoms James had that nobody could have picked up on were seemingly irrational fears, easily over stimulated, random complaints of headaches.
We now feel James is stable, and need to try and start the travel home. We are fortunate to have a car to drive, but humbling ask for help with gas, lodging, medications and medical expenses for James and some bills. Both Dan and I have wonderfully understanding jobs, but we are both too new for any paid time off. I am thankful for all who took the time to read this, and everyone who thoughts and prayers were with our son.
First and foremost I want to thank ALL of you who for keeping James in your thoughts and prayers, they were needed and very much felt.
Let me begin by saying this is one of the hardest things to do. Our children are fortunate enough to stay with my husbands parents for the summer, in NC. My husband's and my plan is to work all summer long.
Sunday, June 9th 2019, we got a call from Dan's mom, Conni Futrelle, around 6:45 am, she made it clear from the start that James was fine and that he had a seizure around 3am that morning. About 20 minutes later I received a call from a doctor and she informed us of what had happened and said James' seizure lasted around 30 minutes. She had awoke to the sounds of James seizing and by that point James had already vomited and I believe released what ever was in his body, the call to 911 was made and finally connected after about the 4th try, at this point James had bit, as hard as his body would allow, into his tongue he also began to foam (not sure if that's accurate) at the mouth, 25 to 30 minutes later EMS showed up, worked on him for what I assume was 10 to 15 minutes before the decision was made to transport him to Onslow, his siezure continued until they reach the hospital, where his fever spiked at 105. They injected him 3 or 4 times with a seizure reversal medicine but quickly had to reverse those affects or he would overdose.
James was flighted to Vidant Medical Center in Greenville later Sunday morning. During this time Dan and I were in full panic and scrambling on how to get to our baby that's over 1200 miles away. The information they originally heard was that James was unresponsive, this would had been around 7am that morning, so the ultimate fear set upon us. When we got to James later that night he was asleep, the next day we got an inconclusive EEG reading and then later an MRI.
This morning we got the results from the MRI, James' left temporal lobe is swollen from the seizure as expected, but in that is where the monster lives. But there is also a mark on the left frontal lobe that came from a blood clot due to the Factor 5 pregnancy and also probably what cause his twin to not make the extent of the pregnancy. After 7 years of questions and gut feelings we finally got answers, James has MTS Epilepsy, which is the name of the monter in his temporal lobe. And all those times of him throwing up in the middle of the night and sleeping through it are now chalked up to him have seizures and none of us being none the wiser. His bloody noses are from a constant sinus infection, both of these diagnosis will have to be medicated for the rest of his life. Again our entire family is so thankful for all the thoughts and prayers and the offered help from family and friends, we really found out that there is so much light in seemingly dark places. Dan and myself are extremely blessed and so thankful that all of our questions have answers to them.
Symptoms James had that nobody could have picked up on were seemingly irrational fears, easily over stimulated, random complaints of headaches.
We now feel James is stable, and need to try and start the travel home. We are fortunate to have a car to drive, but humbling ask for help with gas, lodging, medications and medical expenses for James and some bills. Both Dan and I have wonderfully understanding jobs, but we are both too new for any paid time off. I am thankful for all who took the time to read this, and everyone who thoughts and prayers were with our son.
Organizer
Katie Futrelle
Organizer
Moorhead, MN
