I will start this blog post by letting you know that everyone is OK.
Picture it, it's Friday June 7. Around 1:45AM, Aidan is at my bedside and says his head hurts. I get up with him and we go in the bathroom to check him for a fever. He immediately goes to the toilet and motions for me to turn on the light. I do and he vomits several times. I get him cleaned up and then take his temperature. It is reading 98.2F, so I get him a puke bucket and comfort him and he goes back to bed. Curt wakes up to hear Brady coughing around 545AM, so he goes in to check on him and possibly give him medicine. When he goes in the room, he sees Aidan sitting in bed, catatonic. He tries to talk to him, thinking he is dreaming/half asleep, only to hear Aidan talking gibberish, and then he notices his left hand is shaking. He asks Aidan, "Do you know who I am?" and Aidan just stares at him with no recognition. Curt picks him up and brings him into our room. When he wakes me up he tells me what happened and he needs help. He says Aidan is not holding on to him at all and he is stiff. He puts Aidan on my lap and I can feel the convulsions getting bigger. I realize this is a seizure and say so.
Curt immediately begins to get dressed and as the seizure is NOT stopping we realize he cannot take him to the ER himself, but we need to call an ambulance. Aidan continues to seize, for about 15 minutes total. The EMTs have to give him medication to make it stop. The wait is interminable. Terrifying. Exhausting for everyone. Brady and Gavin are woken by the sirens and Curt brings them to watch TV in the living room so they won't see Aidan. Brady peeks in on his way past and I can tell he is frightened. Our neighbor, Marla, is in our house with the boys and says she has them. Curt goes to the ER with Aidan in the ambulance and I call his folks first to let them know what happened hoping they can come and help, they are practically in the car by the time the phone call is done.
Marla takes B&G to her house for cartoons and breakfast and her daughter Kate will watch them when she has to go to work. I head to the ER calling my folks on the way to let them know what has happened. It is only 6:15 AM by now.
When I get to the ER, they are still doing intake stuff with Aidan. Several times, he appears to be having seizures. They are short lived, but typical Grand Mal seizures. It is frightening. They finally get an IV in him to provide anti-seizure meds that are more long term. They are talking about him being admitted to the PICU. I climb in bed with him once they have stopped messing with him and am just holding him. He feels warm - by now it is probably 7:30 AM or so. The PICU Dr. on call examines him and says that based on his vitals, he does not need to see him in PICU. We tell him politely we hope he never has to see him and he agrees with us. Soon after the pediatric Neurologist comes in to see him. He also notices his fever. When they take it it is 104F. Dear God. It goes down to 102.5 before they are even able to give him meds, so that is good.
Aidan was admitted to the pediatric unit to watch him for seizures. The neurologist said that he thinks it may be a febrile seizure, even though it doesn't LOOK like a febrile seizure and until he can rule anything out he will treat him as though he has meningitis. They begin pumping him with antibiotics and antivirals. He sleeps some, but is then asking for food. We can't give him anything to eat or drink until they have completed the lumbar puncture (LP) in the event they need to sedate him fully for it. Fortunately, they are able to have the LP around 2PM that day. By 230PM we are back in the room and ordering him food and drink. By 3PM he is eating yogurt and drinking juice. By 5PM he is eating pizza and more yogurt and milk. His tummy is so distended, he looks like he ate a whole ham. Curt stays with him that night. Brady and Gavin came to visit with grandma and grandpa K and aren't real happy about leaving Aidan in the hospital, but they do OK.
We get home late and put them to bed with the promise that i will sleep in their room on the floor. I don't really want to sleep on the floor, but I won't fit in Aidan's bed and I want to be close to them. It is uneventful until Brady wakes me up at 6 AM putting his face on mine. We snuggle for a half hour until he hears other people up. Gavin does the same and tells me he dreamt that Aidan didn't have a seizure.
Peggy and Larry and I take B&G to the Arts Festival downtown. There is TONS of stuff for kids and it is a good distraction from the worry in our lives. Walking to get water, I break down in the middle of Iowa Avenue. I just feel awful. B&G keep saying things like "when Aidan is out of the hospital, can he come to this?" They take some pictures for Aidan to have in his room. We all go to visit after lunch that day and when it is time for Curt, the K's and B&G to go home it is terrible. All three boys are crying and hugging each other and Aidan is saying he wants to go home and Brady and Gavin are saying they don't want to leave Aidan. It is truly the definition of heartbreaking. That night we are told he is out of isolation and he can go to the playroom. He walks all the way there and back by himself before dinner. After dinner he wants me to carry him there, but he tries to race me back to the room on the way back -WHAT?! Especially impressive since he had complained of major leg pain much of the day.
Poor Aidan blows his IV around 7 PM. They don't get people there to get him stuck until close to 9PM so he can continue to get his antivirals/antibiotics as we have to wait until sunday to see how the tests came out to see if he can go home. It takes 4 pokes and nearly an hour and a half before they get an IV in him. It is MISERABLE. he falls asleep nearly as soon as we get back to the room. I am wired. Around 4 AM i hear the nurse. Around 7AM Aidan wakes a little and says his hand hurts (where the IV is). I see it appears to be swollen, so I call the nurse. He has blown another IV. A doctor we haven't seen yet comes in and tells me that he HAS to have an IV, he will NOT be able to come home that day - the test results take 3 full days, not 2. I nearly lose it then and there. Aidan's nurse, sweet Katie, comes on duty and she and April (night nurse) have talked about how awful the IV process was the night before. She talks with his team to see if they can offer him oral meds since his feet, elbows and both hands have all been poked and not able to hold an IV. Thank GOODNESS they agree. His neurologist, Dr. Banthius, comes to tell us the results WILL be back sunday and based on everything he has seen, we should be able to go home. Aidan began complaining about headaches during this time, so they were treating with ibuprofen.
We are released around 3PM and we are joyous! Brady did NOT want to leave Aidan to go and get lunch until we had promised he could come back and hang out. I don't know what we would have done had Aidan not been released that day. They say they think it was a febrile seizure, even though it was not textbook. We are following up with his pediatrician this week since he still had some headache issues, still has pain in his back (and a big bruise!) near his LP. Luckily a nurse from UIHC called monday to check up on him and shared some more info about post LP concerns - all things Aidan had experienced, but we had not been given info on.
The first night, we all slept like rocks. Around 1AM curt woke up, but didn't know why, so he went to check on Aidan, only to find him sitting up in the same position from Friday morning. SO SCARY! He is able to get Aidan to talk, but Aidan is whispering so he can't hear what he is saying. Aidan is able to walk into our room and i am able to get that he is having a bad dream. Monday night was worse, with him being awake and in and out of bed until nearly midnight. At one point, he must have heard curt and i coming to bed, because he opens the door and says "I want to give you a hug and kiss" - who can deny that?! I ask him, as i'm putting him back to bed, what is wrong and if he is scared. He shakes his head yes and says he doesn't want to go to sleep. Around 1130PM he is up and asks for a snuggle. I bring him into bed with us and shut off the lights. After about 5-10 minutes, he asks to go to his bed.
Tonight has been better for his sleep. He only got up twice to pee but appears to be sleeping. I woke up around 1 AM thinking I heard someone trying to open their door, and now 2 and a half hours later I am typing this. I am hoping once this is off my chest I can go to sleep too.
We have had such an outpouring of care and concern and offers for help, it has meant so much these last few days. We are counting our blessings. We were supposed to be in Atlanta this weekend to celebrate Lindsay Coco and Justin Jeffery's wedding, but I can only imagine how awful we would have felt had this happened once we were already there. So while we are completely bummed to have missed that, we are glad we did not have to have a day of travel between Aidan's seizure and being able to see him. And tonight, all three boys were excited to sleep in their undies since it is warm out and to watch some soccer before bed together on the couch. They are darling.
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| Aidan on day one - showing his army tank he got for getting his LP. What a trouper! |
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| Mom and Aidan - Day 1. Can't get close enough to this little boy. |
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| BAG - one week since the seizure. They are "dressed" as a police man, fireman and EMT, respectively. Impact them much??? |
