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Saturday, May 19, 2007

Breakthrough Seizures Do Happen...

...and they suck.

Tiffany and I are sitting down to potentially the last lunch we will have together for a long time as she is moving away. I hear a guttural sound on the monitor and I know something is wrong. It was a tiny sound that sent me running up to Ellie's room where she is having her nap.

She has thrown up on the bed. She is all wet. Tiffany comes up to see Ellie. She is one of Ellie's best friends as well as mine. Tiffany is an RN.

I get Ellie out of her wet shirt. She is very floppy. Not holding her head up at all. I think it is because she is so tired from being up between 2 and 6 am last night. I get her into a clean shirt, remove the soiled pillow, replace it with a new one and put Ellie down on it. She is silent.

For one split second she recognizes Tiffany who is one of her favorite people. A flicker of recognition passes on her face and she smiles a small smile. Then she looks at me. Her eyes dart to the left. The smile freezes. I say, "Ellie, say hello to your Tiffy!" She is looking at me. It looks like that should hurt her eyes to be that far to the left eventhough I am sitting to her left.

I pick her up and put her on my left knee because then she will have to look Right to see me. Her eyes don't move. Tiffany says, "She's having a seizure, put her on her side." I do and then we get the emergency diastate and give her a dose. She vomits. She is still seizing, floppy, eyes twitching and still deviated to the left. Then her breathing is choked sounding. I call 911 yelling back to Tiffany, "You know CPR, Right?!"

Tiffany rubs Ellie's back, listens to her heartbeat, counts her pulse and times her seizure. It's great being friends with a nurse - especially at times like this. I am trying not to cry. The tears are there in my eyes, hot and stinging.

The ambulance crew and fire team come just as the seizure stops and Ellie puts her thumb in her mouth and wants to go to sleep. A good sign. Post ictal - the brain reoranizing after the storm.

There's and ambulance and fire truck on our tiny street. They give her oxygen though her color is good. They take down the details. They pack us onto the ambulance and rush us to children's. Kerry the EMT gets the IV in - no small feat on Ellie's tattered preemie veins. Ellie is still out of it and satting at 85. More oxygen and quick conversation about giving her more diastat. Then her sats rise. She wasn't dusky but very ice white with bright red cheeks. I didn't know that satting at 85 could look like that.

The driver uses the siren on and off because I tell him about her auditory defensiveness. The closer we get to the hospital the more Ellie is coming out of it. I am there with her. They let me sit by her. I am telling her she is a brave girl and that she will get to rest soon. We get to Children's Hospital, Tiffany is there, dada is there. They do a scan. Her ventricles are fine - no surgery today for anxious surgical interns. Her depakane level is 72. 3 points less than it was a month ago - still in the therapeutic range.

7 hours and after telling 10 people our whole bloody history to current status we are home on a new med regime and Ellie wants her videos, food and to play with her toys. Mama wants to have a good long cry.


niobe said...

What a stressful and difficult experience for all of you. I'm so sorry. And sorry too that your friend Tiffany is moving away.

I wish I had something more helpful to say than that I'll be thinking of you and Ellie.

23wktwins'mommy said...

Oh Kathryn I am so sorry that Ellie and you had to experience that. Tears flooded my eyes as I read this post. It must be so scary to see your child, the love of your life, undergo something so frightening, especially at home and not in the confines of the NICU, where my two did their scary stuff.
I am thankful your friend the nurse was there, even though I know you are a very capable mommy and you could have handled things if you'd been alone.
I hope this new regimine of medications work for Ellie and I pray that nothing like this happens again.
I'm glad she was back to herself when you arrived home.

Eliza said...

Aw, crap. I'm so sorry! My little one doesn't have seizures, but aspirated very slightly at home one time during a bad vomiting spell. NOTHING is as horrific as looking at your child and realizing that this could be *really* bad, and having to call the paramedics. And then there's the super-fun ER process to wade through, which is always SUCH fun when you have to rush out the door without bringing a hospital bag (I keep one packed with the bare essentials since hospitals never have my kid's elemental pediatric formula on-hand, and rarely have the extensions for the button--last time we were in the ER the nurse brought something they wanted to give through the tube and asked if I could do it because she had no clue how a mic-key button worked) and toys, snacks, etc. Bleh. I hope the new meds give Ellie a nice long stretch without any seizure activity.

Kathryn said...

Niobe - see my comment on your latest post. Great blog by the way.

23weeker - thanks. It is tough and thanks for the vote of confidence. There was a split second when my mind blanked and I didn't know how to give her the diastat then I it passed and I gave it. Ellie's angels made sure she had help via Tiffany and mama. Thanks for the vote of confidence and the prayers - we could use them.

Eliza- you pretty much have the whole ER experience pegged! Having the bag is a great idea - I just said that we needed to have this to Dave this morning. All I had was my cell phone and purse. When Ellie was done sleeping (after 5 hours) all she wanted was her favorite toys and to play. And I had none of them as well as no extension or food or clean clothes. Bleh is right! I hope she get's a break too. Today she seems her old self, thankfully!

catherine said...

I hope everyone is feeling better and that you get a good sleep soon. A trip to the spa would be nice too :)

Anonymous said...

hey, hope lil elle belle is bouncin back? and that u and dave r aswell? big hugs and kisses from ireland
aunty sue sue

Anonymous said...

Ohh, that sounds so rough. The unexpectedness of it all adds to the stress, too.
Hope you and Ellie both continue to feel better.

Maureen said...

OH Kathryn, I'm sorry that Ellie and you had to go through that. I am glad that you were able to get her to the hospital quickly and that you and Tiffany were able to help before the ambulance got there. I admire your strength so much - I could feel the tears as I read your post and I cried them with you. Hope Ellie adjusts well to the new meds.


Lori said...

Oh Kathryn.... I don't want to be one of those people who says, "I don't know how you do it" because I do know that I could too if my child needed me in this way. But I still think you are incredibly brave, and you absolutely deserve a good cry.

I hope Ellie bounces back quickly and that the new meds will prevent any more episodes like this one.

Jennifer said...

Yes, they do suck. I'm sorry you had to go through that. I hope this is the last time for a long time, if ever!!


Jacqui said...

I want to cry with you.

Anonymous said...

Oh my gosh! That is abslutley horrid!!!!! I am so sorry that happened to you and your family. You are in my prayers!!

-Kathryn (cool we have the same name, even spelled the same way, rare, makes looking for things with our name on it hard though)

ps: I found you through Billie's blog

Rick said...

We are here in Florida reading your blog (Rick, Troy, Marc and Heather) wanted to offer our support and warm feelings to you, Ellie and Dave. Hugs from all of us;.

Kathryn said...

Hi Everyone - thanks so much. It's Sunday morning and Ellie slept through the night again (that's two in a row - don't tell the GSST). And she seems her old self, bright and wanting to play all the time and happy.

Thanks for all the hugs and support through the ethers - it all helps.


PS - hey Rick, Troy, Heather, Marc and the entire St. Augustine crew - wish I was there!!! Can't wait to hear all about it!

Angela said...

Oh no! I am so sorry! I HATE SEIZURES -- and I am so glad to read she's back to herself after some much needed rest. You handled things beautifully. I am glad you had a friend there with you. Many hugs to you and Ellie. I wish this never had to happen for any of us. Lots of love to you guys.

The Preemie Experiment said...

Hate those break through seizures! I swear they are harder to get under control.

Paige has been off seizure meds for almost 3 years. Although her EEG's are always abnormal, we hadn't seen any activity. That is until recently. Recent EEG showed continuous spikes. No fun.

Hope all is back to normal for you soon.


Danielle said...

Ugh. What a long, difficult day for you guys. So frustrating, I imagine ;(

Maria said...

I am posting this thread to see if other people here have experienced anything similar, to see how they dealt with the emotional trauma, and maybe to hear how things turned out for them, although I know that isnt how things will necessarily turn out for me. Please, dont post medical advice, none of it will be followed as we have a team of world class doctors who are already in charge.

So my son was born the other day. He had a rough labor that lasted 43+ hours from the onset of contractions (not part of the problem) and which ended in a hyper-acute cesarian section. My son had a little trouble waking up, but seemed fine, until he started having seizures about 12 hours into his new life.

Now he is in a neonatal intensive care ward. Its been a real rough ride, but he seems to be stablizing. Me and mom have it horribly, but we are doing better and we are still in there fighting the good fight. We got some tentative MRI results, he has had some kind of "changes" that effect a major part of his brain, tho not any core systems, and which are the cause of his seizures. It looks like bloodclots, but then again, not really. Truth is, the doctors (and we literally have our countries' best) have never seen anything like it before. abogado espaƱa veterinario por internet medico online abogado online consulta online veterinario online psicologo por internet ginecologo online dermatologo online pediatra online doctor por internet medico por internet abogado por internet abogado online psicologo online doctor online But he is stablilizing. And his background brainwave activity is normal. And he can grasp and suckle, tho he is kept unconscious for most of the time. We know that infant brains are "unmapped" so to speak, and they can recover from vicious damage that would kill an adult. They can also regenerate dead or damaged tissue, unlike in adults. So we have that going for us. We have a lot of hope that he will come thru this without permanent effects, but of course we live in constant dread that things will not end so well.