As most of you probably already know, a little over two weeks ago Clark had a seizure. It was the scariest thing I have ever experienced, I sincerely thought he was dying. The worst of it lasted over 10 minutes, and by the end he was turning blue around the mouth. He was totally unresponsive, although breathing normally, for another 45 minutes after that. Because he was unresponsive (including a total lack of reflexes) the nurse in the ambulance told me she thought his brain was probably still seizing at that point. Because of our rural location and the fact that we waited for the ambulance, (something I regret doing) we did not make it to the hospital until a full hour after the seizure began. Clark began to wake up then and was very sleepy and disoriented before falling asleep a short while later.
The doctor diagnosed it as a febrile seizure, despite the fact that Clark did not have a fever at the time. He did have a pretty nasty ear infection, which he had been taking antibiotics for since the previous week, so the doctor told us he thought the infection caused the seizure. They hospitalized Clark for a couple of days to give him a stronger antibiotic via IV, and eventually as a shot when the IV collapsed, and to observe him. When they released him his ear was looking much better, but at his follow up appointment two days later it was back. They gave him another round of a different antibiotic and he had two chiropractic adjustments, after which he was much better. We had another appointment this past Friday and his ear was still a little pink. Clark has never had an ear infection before so the fact that this one seems to be so tough has been rather disheartening.
Because of Clark’s history we are hesitant to agree with the doctor that it was, in fact, a febrile seizure. Although, of course, we hope that it is since the chance of having another seizure would be really small. We did contact Clark’s neurologist at Mayo and she spoke with the ER doctor that treated him, although she did not speak with us. All we were told was that she agreed with the ER doctor that it was a febrile seizure.
We are really thankful for all of the prayers and support we have had through this whole experience. Our neighbor, Nita, came as soon as we called her to stay with the older boys. I think she was there before the seizure was even over. Thank you to everyone who brought us food at the hospital, and the week after. Our church family has been so supportive even though we have been such sporadic church attenders over the past year because of Clark’s morning nap (the only one he is guaranteed to take so we don’t mess with that). If you could continue to pray for the two older boys we would so appreciate it. Both Remy and Smith saw the seizure. Remy seems to be processing it better than we expected but Smith has become extremely naughty and violent ever since the seizure. We are not sure how to deal with that appropriately.
As it sits, Clark has follow up appointments in the middle of April at Mayo that had been made before he had his seizure. We will decide in the next couple of weeks whether we will actually keep those appointments. When I spoke with his primary care doctor there, before he had his seizure, she had said they had no plans to do any further tests on him, so those appointments were essentially to weigh him and observe his development. If that is still the plan, even after the seizure, I do not believe we will go back to Mayo at this time. Clark’s pediatrician can track his growth and development here without us making the 10 hour round trip trek to Mayo. My feeling is that if there is anything for Clark to be diagnosed with, it will not happen until his is older. It is a little hard to find a balance when trying to advocate for your child when you know something is wrong, and trusting the trained medical professionals who all are of the opinion that there is nothing there to diagnose.
Currently, Clark is having therapy twice a month in our home. He is doing much better with eating and is able to eat some soft crackers or pieces of bread, which is encouraging. His primary source of nutrition is still bottles and pureed food, but he is very frustrated by not being able to eat the food we eat. He can stand for a few seconds on his own, but is still quite a ways from being able to walk. He loves his therapy though, and when he sees the two ladies that come to work with him he gets really excited because he knows they are there to play with him. We are really thankful to be in Minnesota where there are so many great state programs to support kids that need a little extra help.