Yesterday, however, was our worst day since surgery. PJ went through a five and a half hour period of cluster seizures. He got some breaks but just couldn't completely pull himself together. Finally the hospital said if we see one more would need to administer his emergency meds and call 911. We were pretty upset at the thought of being hospitalized and giving him medicine that would take two days to ware off (we despise the emergency drugs it makes it impossible to see if he is no longer seizing...but know they are also necessary to help his muscles from being damaged). Thankfully though he snapped out of it and like magic was back to normal. It drives us crazy...there is no trigger, no method to the mayhem, no reasons what so ever for his episodes. That's what makes things tough. Even tougher and more scary to accept is that no medicine can stop his seizures it just truly does what it wants for however long it wants. Soon I hope he will be free of these seizures...five more days till we find out if it can be done!!
Thursday, March 28, 2013
One Year Post Op and his Worst Day Since Surgery
Today marks the anniversary of PJ's life saving surgery!!! We thank God daily for blessing us with this amazing little boy!!! We also are thankful to the Mayo hospital for doing all they could to find answers and for taking such remarkable care of him through his long stay there. He is our miracle child. :).
Yesterday, however, was our worst day since surgery. PJ went through a five and a half hour period of cluster seizures. He got some breaks but just couldn't completely pull himself together. Finally the hospital said if we see one more would need to administer his emergency meds and call 911. We were pretty upset at the thought of being hospitalized and giving him medicine that would take two days to ware off (we despise the emergency drugs it makes it impossible to see if he is no longer seizing...but know they are also necessary to help his muscles from being damaged). Thankfully though he snapped out of it and like magic was back to normal. It drives us crazy...there is no trigger, no method to the mayhem, no reasons what so ever for his episodes. That's what makes things tough. Even tougher and more scary to accept is that no medicine can stop his seizures it just truly does what it wants for however long it wants. Soon I hope he will be free of these seizures...five more days till we find out if it can be done!!
Yesterday, however, was our worst day since surgery. PJ went through a five and a half hour period of cluster seizures. He got some breaks but just couldn't completely pull himself together. Finally the hospital said if we see one more would need to administer his emergency meds and call 911. We were pretty upset at the thought of being hospitalized and giving him medicine that would take two days to ware off (we despise the emergency drugs it makes it impossible to see if he is no longer seizing...but know they are also necessary to help his muscles from being damaged). Thankfully though he snapped out of it and like magic was back to normal. It drives us crazy...there is no trigger, no method to the mayhem, no reasons what so ever for his episodes. That's what makes things tough. Even tougher and more scary to accept is that no medicine can stop his seizures it just truly does what it wants for however long it wants. Soon I hope he will be free of these seizures...five more days till we find out if it can be done!!
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Hi Marcie, and family
ReplyDeleteI really feel for you. This is a really heavy burden to carry on your shoulders as parents. God is walking with you. I would enjoy a conversation sometime.
Warm Regards
Ken
-the lininger family