Tuesday, March 3, 2009

Febrile Seizure

Please forgive for the rambling - I'm on one hour of sleep and still in shock, I'm pretty sure.

I never imagined in a trillion years after my last Disneyland post that this next one would be so serious. No parent can know the true horror of what Anil and I went through last night unless they have been through it - and we were no different than those parents until last night.

Noah had a febrile seizure. At the time, we had no idea that's what it was. All I knew was I was going to bed and heard pretty soft but fairly strange noises coming from his nursery...at first I assumed it was just him trying to get comfortable as he hadn't been feeling well, runny nose and stomach problems. But a moment later I decided to get up and just do a quick check to make sure, get him comfortable and that's it I thought. I walked in and knew immediately something was wrong.

Noah was shaking, convulsing, eyes open and all together wrong. For a moment I thought (HOPED) it was just a little night tremor and all I'd need to do was wake him up and he'd be fine. I tried for 1/2 a second and got nothing and screamed for Anil to come in, as he was coming back from taking our dog out. The next 5-10 minutes were intense. We both screamed, we kept trying to wake him up and we were getting nothing but arms and legs jerking wildly, his eyes rolling back into his head and not coming back, vomit, the most bizarre noises I've ever heard and a lot of us completely freaking out and not knowing what to do - screaming things like 'stay with us, Noah!' and 'Don't leave baby stay here' if that gives you any idea of where our fears went witnessing this horror.

Of the many things I'm now so grateful for as I lie here in bed next to the single most precious gift I've ever been given - who is fast asleep and still with a slight fever that we're keeping down with meds but fine- - at the top of my list is my neighbor who ran downstairs when she heard all the screaming. I believe her calm soul and mother's love (she has a 12 yr old daughter) saved us in that moment. I handed Noah to her seeing that she was clearly and by far the most contained in the room and she held him tight and spoke to him calmly, even as he was twitching and shivering, eyes rolling back in his head and noises coming from his mouth that didn't seem human.

Noah finally stopped convulsing when she held him, which was a miracle at that point, but he was still making those noises and completely non-responsive, eyes open and eyeballs to the side, listless, for the next few minutes until the paramedics arrived through the paramedics being here for another few, through the ambulance ride where Noah and I laid on a gurney while I tried everything to get him to come to - the alphabet song, yo gabba gabba, Dominic's bing bong nose trick, asking where 'puppy' is to which he usually replied 'puppy puppy puppy' with the most excited voice, singing Anil's mom's little song 'baby ba-bu', telling him I loved him, asking him to say hi to the paramedics who were trying to get him to respond to their fingers moving, begging him to come back. Finally as we pulled into the hospital entrance, I saw his eyes move ever so slightly following the hand of a very kind paramedic who said 'he followed, that's a good sign'...my first tiny sigh of relief. I kept asking the paramedics if he was going to be okay on the ride over but got no answer, thinking in hindsight and trying to tell myself at the time that they couldn't for legal reasons tell me he was going to be okay, but hard not to hear it from someone in that moment.

They pulled us out of the ambulance and took us inside and we waited a minute or so for a room, then they wheeled us in - all the while, Noah is still not coming to, barely aware of his surroundings, and shivering and sweating at the same time. Anil and I were just in a panic, I can not lie, and did not know what to do, what was happening or when this was going to end or HOW.

The nurse took his temperature and it was 104.3 - I'm certain it was higher when this first started and he had cooled down a bit, as his body was on fire when we found him. After what took like forever because as she explained they had to weigh him and be certain that they were giving him the proper dosage (which to me meant they were coming back with some heavy duty stuff to break the fever) - I kept asking "aren't you going to do something to bring the fever down?" to which they replied 'it's coming, we have to measure it out...blalblah' and much to my surprise they showed up 10 minutes later with a normal dose of children's tylenol!

No matter, it slowly and I mean slowly but surely did the trick. He started to come to, focusing in on people, on me, on dad, on the nurses and finally started to react to our constant prods. The first moment I saw a slight grin come across his face was a result of peek-a-boo I believe almost 2 hours into the incident and it was the single most amazing sight of all times. As the next hour wore on, he regained his personality and the grins became more frequent along with his cries and sleepy grunts - the sweetest sights and sounds I've ever heard.

Our dear friends, Chris & Heather, you know...amazing Mimi's mom & dad, really helped us by Google-ing febrile seizure and sending us info on it - which was our first indication that Noah was going to be okay - and we needed that like nobody's business.

And sweet Crystal came down to give us hugs and make Noah smile even bigger with her mad skills with the guy.

And in the end, Noah is okay as evidenced below - lounging in our bed in his new 'i'm at the beach soaking in the sun' pose, exhausted but without a care in the world by the looks of things.

To say that this was a game-changing, life-altering experience would be an understatement. As dramatic and blown out as my words might seem hear, they do nothing to describe the sheer terror and fright we felt in those moments last night. Nothing will ever be the same again. Just when we thought that we could not be more grateful for this little boy in our lives, we are a trillion times more grateful - for him, for us, for our friends, our family, our lives and I am personally grateful to you for reading this blog post. It has been therapeutic for me to write it so thanks for saving me the doctor bills (I hope!) and make sure if you're a parent, you read up on febrile seizures...we keep saying that perhaps if we'd known at least that it could happen like that and what our reactions might be, we may have been SLIGHTLY less flipped out, but no matter what you read, nothing can prepare you for anything like this happening to your child. It did prove to us again though how resilient they are, and for that we are also grateful. We'll be watching him like a hawk for a while (ok forever) but we know he's tough. Ironically, he was wearing his 'tough guy' Pj's with gorillas all over him last night too - that is for real.

Off to his pediatrician's now for a follow-up but will update again when I can. For now, the photos...




Update: First off, thanks for the comments - my gratitude is seriously overflowing right now. And thanks for the great tips Grace - I will follow them gladly, starting today. I actually forgot to mention that I was at one point while holding him flailing and trying to pour him a bottle of water thinking he might be dehydrated, trying to give him mouth to mouth resuscitation as another desperate, uneducated measure to bring him back to us. That was quite a sight and one that I'm afraid is sticking in Anil's mind a bit too well at this point.

So doctor said that we do not need to worry and that 94% of the time these seizures at not harmful which is the good news. The not so good news is that she said he is very likely to have a seizure again, possible multiple times. The type and length and other factors Noah has put him in a category where more often than not, they recur. This is mind-blowingly frightening for us as you can imagine, but at least now with the education and awareness, we can be ready...ish.

Here's a very 'factual' article from the NINDS on Febrile Seizures - it gives you all the facts. What it doesn't give you is the emotional toll that you may experience as a parent, if you are anything like me. Other articles mention the 'horror' & 'trauma' but I think you guys get this from my post. I hope I will be better equipped if there is a next time.

We are squeezing Noah even tighter today and know that he will be okay (and I've managed to get another hour of sleep and the boys are still sleeping now!)- Anil and I were both amazed at the flood of thoughts and just raw emotion that flooded over us last night - and through this, for the good, our lives will not be the same. As all of our adoption buddies know, even with our coined 'fast pass' it was still an intense process for us to bring Noah Arone home - and the very-real-at-the-time thought of losing him, even now knowing that it was unlikely to have happened, has changed us completely...and we are choosing to see this as another one of our blessings in disguise.

27 comments:

Laura said...

You got me! Reading this, even after talking to you earlier, I cried! Spoil him rotten and don't worry, Auntie L will be doing lots of long distance spoiling until the 12th. Thanks for spelling resilient for me. I totally agree on that point. Lots and Lots of Love, Auntie L

graceling said...

Just want to chime in...

Make sure you also have your local poison control number posted in an easy-to-reference spot.... you don't want to be searching for it when you realize your toddler has eaten half a tube of butt paste. Ask me how I know this.

I also keep a adult/child CPR picture guide handy in the kitchen. Even as a RN, when it's MY KID that is sick, I tend to loose my cool. You will never ever regret having that info handy.

Glad Noah is feeling better! Sorry that it was so bad for you... another right of motherhood and you did great!

Julie said...

Oh my God! How terrifying! So sorry Ange. I am so, so SO happy he is okay. What a night for you guys. Big hugs and kisses.

msl said...

I can't imagine how horrible that must have been - truly to the bone frightening!!! So so glad to hear Noah is much better today!!! Thank god you had such an amazing neighbor and Chris and Heather!!

Jocelyn said...

I am so sorry that sweet Noah had to go through this (and you two as well). I am glad to hear that he is doing fine now..here's to no more fevers!!

filoli said...

Oh no! My amazing wonderful and completely healthy little niece had these too when she was an infant...and they were HORRIBLE.

I remember the horror of the testing and the seizures...there is a whole section on it in her baby book.

The good news - the great news, is that it suddenly stopped and suddenly as it started and she is fine.

I mean fine, crazy fine, she is 4 and speaking and reading French fine, twirls in a circle with her skirt fine, walks on a balance beam fine, sleeps through the night fine, giggles at the idea of frosting cookies fine...

she is fine.

and thank goodness for your neighbor,

and your friends,

and for you noticing the odd sounds,

now go get some sleep.

Rebecca said...

Oh Ange. This is scary stuff! I was getting chills and tears were coming to my eyes. I'm so glad Noah is ok. I think if anything like that happened to Eli, I would die from heart failure. You handled things much better than I would have.

Give Noah a big kiss for me!

Ali said...

I am so happy that he is ok! That made me cry. I could only imagine what you guys went through. I am so sorry he experienced that. Hugs

Ali

m&r said...

Wow. My heart was beating so, so fast (and then nearly stopped) as I read this. I am so glad that Noah is doing well and I thank you for sharing this and educating us about these seizures. The experience of parenting continues to amaze me, as it opens up my heart in ways I never, ever thought possible.

Catty Ax Lady said...

Good grief, what a horrible thing to experience for all of you!! I can't even imagine. I'll say prayers that Noah's fever stays away, and for comfort for you and Anil...not much could be more terrifying than what you've been through!

Danni and Tommy said...

Crying big ugly tears. I'm SO sorry sweet Noah and you had to experience that. I'm just so sorry.

The Albertsons said...

I'm so sad that you had to go through that, but so so so glad that he is okay. We've been down that road with our kids... one having to be rolled into emergency surgery, one having stopped breathing and i had to unblock his airway... the feeling of sheer terror cannot even be spoken or written... it's simply the worst. I'm praying and hopeful that he'll never have another seizure again, but that if he does, peace will wash over you and you'll know what to do.
so glad you're resting!
becca

Shannon said...

Noah has the most amazing parents in the world. I'm so glad you all three are OK now. We love you. John, Shannon and Booker.

coffeemom said...

You all will by in my prayers. I know EXACTLY how you feel, and it's the worst feeling there is.

Febrile seizures ARE common and he'll be ok, and I"m glad that they let you know that is what it is. That's a relief too and good info! I pray he outgrows them fast....

But NOah is gonna be fine and good, and yeah, you'll worry and keep him dosed up w/ tylenol the moment he starts feeling warm. And that's ok too. You did great mom, it's a hard thing. I 'm SO sorry you had to go through it. Hug him and now try to relax again......

Jennifer said...

Oh my goodness... How incredibly aweful last night must have been. I am so grateful that Noah is okay and that you and Anil are doing everythign you can to take care of your most special gift. I'll definitley say some extra prayers for your little guy today, and even throw one your way (I can't amagine how awful last night must have been for you). After reading your very powerful post and drying my eyes (actually my whole face) I have the overwhelming desire to go squeeze, kiss, hold, tickle, and give an extra dosage of love to my three little ones right now. Thanks for sharing, and again I am so grateful that Noah is okay.

chrisandshasta said...

Oh Ange - I'm so sorry you went through this! We went through something similar on Monday, although not nearly as terrifying. Dag got into a bottle of hair product. Grace is right about the poison control number - I wish I had it on the fridge. We ended up in the ER and then moved to ICU for overnight observation. Even though I knew he would be fine and he didn't show any symptoms, I was so scared. The "good" thing is that going through something like this makes you even closer as a family. If it's even possible, I appreciate my son even more now. Hugs and kisses to Noah! Thank you for sharing this with us.

Julie said...

Oh my God! How terrifying not to know what is happening to your precious baby!! I'd lose my mind! I'm so glad the Noah man is okay. I hope you never have to go through it again, even if you would know next time what was happening. Hope to see you soon! - Julie O.

mike fabio said...

Sure hope Noah is doing alright. Drop a line when you get a chance so we all know what's going on.

irene said...

Thinking about all three of you. much much much love, irene

Heather said...

My daughter, also adopted from Ethiopia, has febrile seizures about once a month. She gets them with low-grade fevers and just last week had one when 30 minutes earlier she had no fever. It just spiked in the car as we were driving. It is so hard to handle and I am glad your son is doing well. It is weird because I saw you at the Hilton is Addis and another baby who was in our travel group also had a complex febrile seizure. I hope all our kids grow out of them quickly.
~ Heather

Ted and Lori said...

Wow, wow, wow. Incredible. So scary and my gosh, so happy that you guys are okay.

K Leclercq said...

I can't imagine how terrible that experience was. I am so happy that Noah is doing better! Thanks so much for posting this. I'm going to read about it so I will know more!

Katy said...

This post is making me cry uncontrollably. Not just misty eyed. Bawling. Our little Aster was recently very sick and I think I did not process the raw emotion and fear that goes along with it until RIGHT NOW. I'm so sorry you are dealing with this. I can't imagine how scary and sad that must have been. I definitely hear you on the increased gratitude feeling. I hope you are all doing well now.

The Roberts Family said...

Hey you .... just checkin' in and see that Noah has had quite the drama lately!! Those are horribly frightening to watch! Arsema blessed us with the opportunity shortly after returning home from ET. Love you guys!! .. and LOVED seeing all the fun pics. What an amazing little guy! Hope we can see you in person one day again! ~Shelly

Amy said...

I found your blog after searching febrile seizures online. My 2-year old son had a febrile seizure a week ago. It was the scariest thing I have ever seen! Reading your post brings it all back (not that it is that far away in my mind!). What a horrible experience. I thought for sure that I was going to watch him die in my arms. It's nice that you wrote this post, so others can learn about febrile seizures and that they usually look MUCH worse than they are. I wish I would have been aware that this was even a possibility, before it happened. I'm glad Noah's doing much better now!

scaredmommy said...

My daughter is 13 months old and just had her fourth febrile seizure in 4 months. It is definitely the scariest thing ever, even after the fourth one. We have rode in a helicopter to the hospital and an ambulance. The problem is these aren't small little seizures that last two minutes like all the doctors and nurses like to tell you. Her first one lasted over 25 minutes and we have given her medication rectally to stop them ever since. I am trying like crazy to try and research these, but I come up with the same old stuff. I don't really think they know anything about these. We are on our third neurologist and no one knows if they occur because of the fever or the spike in the fever or even if its related to a fever. In China, they are leaning towards the virus or infection causes it. The third one my daughter had with RSV and we had given her Tylenol 3.5 hours beforehand and her temp was barely 99, but two days later she had a spike at 104 with no seizure. Anyhow, I feel for you greatly as this is a very scary time for me also.

Gabe's Girl said...

I just found your blog while searching for febrile seizure. My daughter just had one. It was a nightmare. I keep playing it over and over again. I thought she had died when she went limp in my arms. We did not even know she was sick. She had it in front of us while playing with her toys. I thought she was choking. I tried CPR and everything. I thought I had lost her. I will never forget how blue she turned or how her eyes rolled back. She went so limp and her I could not tell she was breathing. I also will not forget how my husband and I screamed and wailed. We thought she was gone. Our beautiful girl. I still feel the heartache. We watch her like hawks now. We are taking extra care to make sure all our kids now how special they are and how much we love them. Thanks for sharing your experience. I am going to share mine soon when I can. I am so happy that Noah is doing well. I know it has been a while since it happened. Coincidentally, we are expecting and I have Noah as the name picked out for a baby boy.