Search This Blog

Saturday, July 28, 2007

Rainy days are in hospital days for Ellie-luv

Why is it that the rain seems to always accompany me and my family at the darkest moments? Sometimes I think it is God's way of assuring us that we don't shed tears alone. Sometimes I think it might be spirits way of making sure the smiling sun doesn't mock us when we are most afraid. Maybe the rain symbolizes the cleansing effect that the crucible has on the soul. Either way, it was raining today and today has been tough.

Last night Ellie was up from 3 to 4:30am. Dave was with her. First trying to calm her then he fed her and played with her. I heard the whole thing but was trying to sleep because I knew that he would be tired in the morning and I thought at least one of us should try for some coherence. I couldn't sleep though until I heard them both laughing and "reading the box" which is another story.

But my gut kept telling me to go in. It was a tug of war gut versus brain.

At 6:42am, I awoke to Dave's voice on the monitor saying, "Bebe, come in here somethings wrong with Ellie."

I quickly crutch in there and there she is in full on seizure very much like the last one. She is laying on her back, arms straight down her sides and legs straight out. Her eyes are deviating painfully to the right this time and just bobbing there. I turn her on her side and reach for the Diastat kit on her bedside table and give it to her. It's 6:46am at this point. Dave went to call 911 while I gave her the Diastat. He is back pulling out the oxygen and we get the cannula on her. The medics, cops and fire crew are all at our house on our tiny street by 7:51am. I recognize them. They all know about us as they have been here 3 times in the last 6 months.

The seizure is still going on. For the first time the Diastat seems to have no effect. I am calling to Ellie to come back. Telling her "mama's here, sweet pea." "come on back to mama".
The medic decides to give her some Adivan. He does and nothing changes. She is still seizing.

They get her into the ambulance as I quickly change into street clothes. We head toward the nearest hospital. They give her two more doses of Adivan in the ambulance and nothing seems to change. We get to the hospital and she is in a quiet emergency room as it is only 7:30am at this point though time seems like it is in slow motion. Why is she still seizing?

Her eye stops deviating and come to the middle a few minutes after we get there. But Ellie is neither sleeping nor awake. Just lying there. They decide the seizure has stopped but I know this is not yet the postictal stage.

So they decide to give her a loading dose of Fossfentinal in order to allow her to make it to Boston Children's hospital without seizing again. They do and she is knocked out of it. We get in another ambulance and the Children's transport team takes us in. The new medic looks in Ellie's eyes and they are not dilating. In fact the right one gets larger than it already is - and it's huge. The left stays huge with no change when they shine a light in it to check (which by the way is a great thing to do if you think your kid is seizing - if they are their eyes won't dilate properly to light). This is bad.

We get to Children's and they wheel Ellie straight into the CT scanner. Things are moving in that fast slow motion way where seconds feel like minutes because so much is packed into each moment. Finally we are in a room in the Boston Children's ER and the doctors start to come. They did bloods at the other hospital and her Depakote dose is in the middle of the therapeutic range. Her white blood cell count is not elevated. But she now has a fever. She does have an ear infection in her left ear.

They decide to do a lumbar puncture to make sure her cerebral spinal fluid is OK. We agree as her eyes are still not dilating. The CT results have come back and her ventricles are looking smaller than before so we will be able to avoid shunt revision brain surgery that would be needed if she had increased inter cranial pressure. Ellie is being a very brave girl.

They use Emla cream to numb the skin and then put in a shot of Lidocane. That shot really hurts Ellie and I silently question it's effectiveness. There is a guy named Wally holding Ellie on her side in the fetal position to make sure the vertebrae between which the doctor is going to thread the needle stays open. Ellie wiggles though, very strongly then goes limp and keeps doing this. Wally has to be very strong. The Lidocane is in and she proceeds with the lumbar puncture, I am holding my breath and Ellie's hand. Dave is there telling Ellie she is a brave girl and that she is doing well.

This procedure takes 10 minutes with the needle in Ellie's spine while her CSF drips maddeningly slow into 4 different vials, 4 cc's in all. Then it's over, band aid on her back and Ellie checks out and thumb in mouth goes straight to sleep. The results come back and hour later and one doctor tells us that the white blood cell count is low but the protein levels are somewhat elevated. Whoever taught this doc comes from the "cushion the blow" school of thought because when we finally talk to the Neurologist he tells us her protein level in her CSF is 268. Normal protein in the CSF is 40. So the words "slightly elevated" don't come to mind. "Freaking through the damn roof" would have probably been a more accurate description. They decide that though her white blood cell count does not confirm it, they want to treat her as if she has meningitis - viral or bacterial. The scary part here is that if she does have meningitis she will have to have all her shunts removed and replaced. Removing some of her shunts could easily cause her more brain damage.

They also decide to up her seizure meds and give her a loading dose which knocks her out even more. Then they give her two huge doses of antibiotics. I feel like my little family is in some sort of pharmaceutical hell. But what can we say? She does have a fever, she had a seizure that lasted almost one hour and her CSF protein levels are through the roof.

It's 10:13pm as I write this. I just got home from the hospital. Dave will take this shift tonight. I will take tomorrow night because he has a training to attend on Monday morning. I am happy to say that for a couple of hours before I left Ellie finally started to pull out of it. She wanted her videos, and for me to sing the 5 little duckling song, and she started chewing her thumb and making her hungry sound. When we were finally allowed to feed her she kept all her cereal down then went promptly to sleep again.

Please keep her in your heart tonight and wish her a speedy recovery. She needs some angels tonight to guide her through this storm.

I will keep you posted.


Jacolyn said...

Oh Kathryn, I am praying and will continue to pray for your sweet Ellie.

Kathryn said...

Thanks Jacolyn!

Anonymous said...

I am so sorry. I am praying for your family. I want to send a big hug for all of you. I understand, and I am with you in thought and spirit.

Anonymous said...

Ohh, this sounds so very tough. I'll be keeping Ellie and you and Dave also in my prayers.

Rick said...

Poor baba, and poor parents.
My warm wishes and hugging thoughts are with all of you. May the light and sound of God keep you warm and healing this evening and over the next few days.
With Love for all Life,

Anonymous said...

heya kat,

big hugs, kisses and loadsa prayers to my gorgeous god-daughter. hope she's home soom and back on flyin form.

keep us posted
aunty sue

Jacqui said...

Oh Ellie. That is so not a good thing to go through. Thinking of you and Dave, Kathryn. I hope Ellie doesn't need her shunts to be replaced.


Anonymous said...

Thinking of you all, keep us posted. Big hugs and kisses for Ellie. Love Aunty Rie, Uncle Alan and Cousin Emily xxxxxx

Anonymous said...

Dear Kathryn,
I am praying for you, Dave, and Ellie.
Thank you also for sharing the lovely poem.

Penny L. Richards said...

Oh no! Thinking of you, Ellie, and Dave.... recognizing parts of this story too well... hoping for wise decisions and good outcomes there. Glad you got to end this post with the encouraging news about Ellie eating (and keeping food down), and asking for her favorite things.

Anonymous said...

Holding you all close.

Stacey said...

Oh, that must have been terrifying! I'm so sorry, biggest hugs to all of you.

Jennifer said...

oh kathryn, I'm so sorry to hear this! I hope everything turns out for the best - I'll keep you all in my good thoughts!

Big hugs to all of you!

Maureen said...


I have you, Dave, and especially Ellie in my prayers that she will be well again quickly. I am also asking God to guide the doctors to make her well.


Anonymous said...

Kathryn, so sorry this is happening. I'll be thinking of and praying for Ellie. Try to get some sleep and take care of yourself.


Anonymous said...

As a regular reader of your blog, my prayers go out to all of you. Here's to hoping Ellie won't need any further surgeries. I noticed you wrote shunts (plural)...given the craziness that's happened to me over the years as a result of having ONE such shunt, I can't begin to imagine how it must be to have more. (Does it imply that they get even crazier because there's more potential for complications? For Ellie's sake, I hope not!) I've heard of this happening, but it's still kind of mind-boggling. I just hope you all weather this storm and everything turns out OK.

Eliza said...

OH NO!!!

I'm an atheist but I will be thinking of you and of poor Ellie often and checking for updates, and worrying. Definitely worrying. Especially for her, of course, but also for you.
It's hard enough dealing with a very ill child in the hospital when you're in the best of health, and when you're sick or hurt it's just...yeah. No words. Do try to take care of yourself as you take care of her; elevate your leg when you're sitting by her bed and ice it once in a while. Currently I have a torn meniscus and the other day one of my kids had a medical emergency and I realized I'd been pacing for about twenty minutes while I was on the phone with various specialists, without even thinking. I paid for it that night, and wasn't able to get up in time to help with a bleed (fortunately my husband was there, but I felt like a bad mother for screwing my knee up and not being the first one there as usual). Of course you know that to take care of her you also have to take care of you, but when something this awful happens it is easy to forget.
I'll be watching for updates.

Anonymous said...

hey guys,

wishing ellie a speedy recovery. thinking of yiz and your in our prayers.

nanny bernie & grandad paddy

Melanie said...

I hope Ellie and the family are doing better today. My heart broke when reading your entry. My whole family will say a pray for you today.

Melanie & family

Dream Mom said...

Sending prayers your way! I am so sorry to hear about this but glad things are looking up a bit. Please keep us posted. I wish I was there to help.

As for the Diastat, I had an issue like that where it didn't work and it does freak you out a bit even when you know the ambulance is on it's way.

Here's hoping things turn around for all of you real soon.

Miracles said...

I am in complete shock as I sit here and read this.
You will all be in my thoughts and prayers,for a very speedy recovery for your little princess.
BIG hugs to all three of you. Hang in there.


Shannon said...

I am very sorry to be reading this. I will be thinking of all of you ....

Anonymous said...

I hope and pray that all is going well...
Kellars Mommy

Anonymous said...

Prayers for Ellie. I hope she gets out of the hospital soon without further complications. She is a beautiful little girl who has come so far in the last few years.

Rob at Kintropy said...


Our family's best wishes & thoughts are with you. The hospital and diagnosis roller coasters are difficult. We hope you all get some rest and begin to heal well soon.

Anonymous said...

Thinking of all of you a great deal. Sending all of the best your way,


Anonymous said...

Hoping that today is a better day. Love, Emma

Anonymous said...

This is NOT the way to spend vacation! You are in my thoughts and I will send whatever strength I can (though your family is NOT lacking any on your own).
Keep us all posted!

Don't forget that "5 Green and Speckled Frogs" = math

Anonymous said...

my heart's with you and Ellie and Dave. take care.

hugs to you all,