Post callosotomy

(I'm learning so much these days, including how to say that word!) 

I guess I fed Elsie a few too many O's last night.  She was vomiting off and on all night, and this morning too.  Pray she can keep something down as she feels better throughout the day.

More importantly Elsie had a seizure at about 2:30 am.  Normally her seizures last about one minute.  This one lasted for three minutes and then they gave her medication to stop it.  No fun for this momma's heart to see.  I tried to sleep as I worried that we've made things worse and not better.  Because the nurse was really attentive to Elsie's needs, I did pass out on the couch from 3-6:30 or so.  

This morning the epilepsy team said that they did get good information from this seizure.  It looked a little different from the last seizure, but it's more accurate since it's post callosotomy.  They would love to see more seizures over the weekend to confirm what last night's has shown.  But right now it's looking like it's coming from one area.  

Also Elsie seems to have mellowed a bit since surgery.  Obviously she's under a lot of pain meds, so that's part of it, but docs say that it may be a result of the callosotomy.  They said it's kinda like you're watching a fuzzy TV station, but trying to follow the show.  After the callosotomy that background noise is gone and patients can become less irritable and more focused.  That could be a good thing for Elsie.  Time will tell exactly how much mellowing is temporary and how much is permanent.  

2nd surgery...done

Even though she couldn't eat this morning and was kinda grumpy, she was pretty happy to be leaving her room.  

Pre surgery play and snuggles with Mommy, much easier without the weight of those wires!

Then I had a long day to wait.  I showered, got a hug and kiss from Minnie...

...had lunch and then sat with this view

While Elsie was in surgery up there behind me

This time she left me about 1 pm and I didn't get to see her until 7pm.  I got one update that said "she's doing fine and has been stable the whole time."  I talked with her surgeon when it was over and he said she did lose a little blood and that he thinks he was able to do the complete corpus callosotomy but that there were a lot of electrodes in there, which makes it harder to work.  We'll see what the epilepsy team says about that tomorrow.  

Tonight she's doing fine on lots of pain meds.  She was signing for Cheerios and doing the motions of "wheels on a bus."  Now she's getting rewired.

I'm praying she stays comfortable and sleeps tonight.  And that she doesn't have the vomiting that she did after last week's surgery.  

A step forward, but not the end yet

So...hard news from the epilepsy team this morning.  After yesterday's seizure it is still not clear exactly where Elsie's seizures are coming from.  They quickly cycle from left to right side and back again.  The area they think it's coming from hasn't been covered completely in electrodes.  Tomorrow they will do surgery to add more electrodes and disconnect the bridge between the two sides. It's called a corpus callosotomy. Then they'll wait for more seizures.  After that there's a chance without the quick cycling between the two sides they'll be able to better locate the abnormal tissue on the left.  If they can't, they're suggesting a hemispherectomy, which is  disconnecting left side completely.  

We're all a bit overwhelmed at this news, but we're still trusting in this team of doctors to know what's best for our little girl.  Ultimately of course we trust in God and know that Elsie is in His care.  Your prayers are sustaining us.  Thank you!

Praise the Lord!

This afternoon at about 3 pm, Elsie had a seizure!  She was overly tired and it happened in a very typical fashion.  The doctors will review all the data and have scheduled surgery for Friday.  If she would have another seizure before then, it would help to confirm what they saw today, but they will proceed with just one.  They tell me recovery after the second surgery is a better because you don't have all the extra stuff inside.  So, we could be out of here as early as Monday or Tuesday.  I'm so relieved! 

Continue to give the doctors wisdom, Lord.  Keep Elsie as comfortable as possible.  Thank you for being with us through each day. Amen. 

Settling in

You probably won't hear from me everyday.  Life in the hospital gets a bit monotonous.  

Eat, play, read books, dispense Cheerios.  Repeat.  I also repeat the same words to multiple doctors and nurses and therapists who visit throughout the day.  "Still no seizures."  "She's doing pretty well."  "Yup, we just wait."

Elsie reaches into her hair and scratches often when she's trying to sleep.  So I've been sitting or lying next to her and singing her to sleep.  It's sweet and it's bringing me back to the days I sang and rocked Bella to sleep.  

Some of you may think I'm strong to be handling all of this.  I'm really not.  The words of the songs I sing are true. 

"Jesus loves me this I know...little ones to Him belong.  They are weak, but He is strong."  Elsie's not the only "little one." I'm little too.

"How deep the Father's love for us.  How vast beyond all measure."  Because he first loves me, I can keep loving. 

"Through many dangers, toils and snares I have already come.  Tis grace hath brought me safe thus far and grace will lead me home."  His grace is everywhere.  All over my life and this crazy story that I never would have chosen, but can honestly say I'm thankful for it.

I sing the songs to remind myself of the God I'm clinging to in desperate times.  Sometimes I sing them with tears, sometimes with great joy.  But I will keep singing.  Wonder how many times I'll be doing it tonight.  

Today was filled with lots of...

SMILES!  

Elsie loves her new chair and played a lot today.  She took a great nap this afternoon too.  We are thankful.  

However she and I are also engaged in an ongoing battle.  She tries to scratch up under her bandage and I push her hand away.  This battle was absolutely no fun from 2:30 to 4:30 this morning.  Please pray it does not ensue again tonight.  Please. 

Day 3

Today was rather refreshing for me.  I spent lots of time playing and walking around the hospital complex with this little cutie:

Elsie got lots of Grandma time.

While I was in the room, Elsie got some time with a speech therapist.

And she got a sponge bath.

That heavy ponytail is annoying for all of us.  And as you can see Elsie's left eye is very swollen.  They say the swelling should go down by tomorrow.  She ate much more today.  She had a great nap this morning and is resting well now.  We also heard that as they're observing her brain waves they see abnormal activity from the left side, but none from the right.  That's good news.  They also told us that her seizure medication should be fully out of her system as of dinner time this evening.  So, bring on the prayers for seizures! 

All in all, we're doing pretty well.  But in the words of Emma, "I miss my daddy!"  It's hard to be apart.  Really hard.