After receiving the full work up to check her heart- her heart looks great! The event likely caused her BNP to spike initially, but is back within normal limits!! Hallelujah!! Her echo was stable from when we were here 10 days ago and still looks beautiful!! No rejection detected either!!! Thank you Jesus for protecting her precious heart!! ❤️ This news is such an incredible relief- like we can breathe again. Whew!
After visiting at length with Neurology, which by the way, God blessed us greatly with who he sent. The doctor he sent actually knew Poppy from when she was so sick on ECMO, and remembers when her brain injury occurred and her seizures first started. He was also very thorough and detailed!!! I mean, direct answer to prayers!! God you are soo good!!
He was able to explain what likely happened and also visited about what we should do if it ever happens again.
Most likely, Poppy seized while laying in her bed, unbeknownst to us. When I found her, she was in a ‘postictal phase.’ A phase after the seizure where the brain is recovering from the seizure. The longer this phase, the more severe the seizure likely was. Her 45+minutes when she was lifeless, barely able to breathe, unresponsive…this was when her brain was recovering from the seizure she had. Followed by vomiting, being super lethargic and sleeping the rest of the day away, all points to seizure.
He explained how Poppy is already at risk for seizures because she’s had them in the past, her EEG shows abnormal activity (due to brain injury) that also puts her at risk for seizure, and also her age. Apparently kids ages 1-3 are at slightly greater risk than other ages to seize. Often the triggers can be: fever, gastroenteritis, flu, cold, and changes in or lack of sleep. So, because Poppy is recovering from gastroenteritis (tummy troubles), had a cold, and really doesn’t sleep well, he believes her seizure was likely ‘provoked’ and doesn’t feel seizures will become an issue. But when she’s sick or not sleeping well or vomiting, we are to watch her very closely, as it could really send her into seizure.
He is increasing her Keppra (anti-seizure med) dose again, which was last done in November, and since we are so rural, he is sending us home with a rescue dose to be delivered after calling 911, should it ever happen again. The rescue dose can usually stop a seizure pretty quickly by slowing down the brain, however with that also comes slowing of breathing, so it’s important we have trained paramedics on their way with breathing support just in case upon administration.
This stuff is so unnerving, because the ‘triggers’ are common things for Poppy. He even said the scary part is that we don’t know if this has happened before, or when it will happen again, but the reassuring thing is that she was able to break through on her own, though her breathing was rapid and shallow, she never stopped breathing and turned blue, which can happen. She didn’t end up aspirating to the point of pneumonia or drowning… Very true…I’ve heard horror stories about what kinds of things can happen during seizure and what can be permanent damage as a result. The Lord protected her greatly from what could have been. I don’t even have words, grateful just doesn’t even begin to cover it.
Besides being tired, Poppy is appropriate!!! Thank you Lord!!! Her reflexes and motor movements seem to be unchanged!! She really looks pretty good! Thank you all so much for praying ❤️ Neurology would like to get a thorough MRI the next time she is under anesthesia, so that will likely be in April before her heart cath/biopsy. It should help them better determine where her seizures would likely start and where they may spread in the brain, perhaps helping us to understand what her seizures would look like.
Oh this has been such a roller coaster ride, but we are so thankful for an explanation and a plan. Thank you for all your love and prayers. Your kind words and just knowing you are praying helps us tremendously. To all who reached out to help and offer of yourselves, we are so incredibly humbled. This life is not what we planned, but God is faithful, never leaving us on our own, but always walking alongside us every step of the way, through the trials and joys. Thank you Lord loving us so fully…so perfectly. ❤️