Recovery FL style

Elsie is doing really well and going to therapy appointments regularly.  (I'll tell you more about that soon, but let's just say, she's already passed one of her PT goals.) I thought you might like to see what recovery looks like while we're spending this fall in the warmth of southern Florida.

A morning out with Grandpa...on the one day of the week he didn't golf! 

Emma and I enjoyed a hot afternoon at a "fall festival."  (We've been recovering from 20 days in the hospital too.) 

And tonight, Mary Poppins movie night on the patio.

We're so thankful to be at Grandma and Grandpa's house.  They're taking great care of us...all three of us! 

Yesterday and today

We left the hospital Monday evening.  So we've now had two days at Mom and Dad's.  The progress she's made in these two days is remarkable.

Yesterday she could barely sit in her booster seat.  We added a towel because she was leaning to the right.  Today she's sitting just fine.

Yesterday she sat and played on a blanket, reaching for toys, but hesitant to move.

This morning, we went to a physical therapy appointment and they let us borrow a walker for her.  After walking with it several times today, this evening she decided to walk 20 feet by herself!  I was right there to catch her because her balance isn't great yet.  But, wow!!!  She's also standing on her own and cruising around the couches.  

Yesterday we got her outside a little bit.  Today we took her for a walk.  Must feel so good after 20 days indoors.

Yesterday she got to spend the whole day with her daddy, but today he had to leave.  Being with daddy is cause for smiles.  Because her right side is still weak, she has a crooked smile which is just adorable.  

Elsie is eating well, sleeping well, happy at play, and sitting still for books and snuggles.  These two days have been filled with steady uphill progress.  All I can say is "Wow! Way to go, little lady!"  

(BTW, the bandanna is to help prevent her from itching her incision. It was her Dad's idea, isn't it cute?  She usually grabs for it first.)

Oh happy day!

At first they were talking about discharge tomorrow, but then...

They first moved us to another room.

Then we talked with the epilepsy team. After discussing how well she's doing, the head doctor asked us, "so when are you going home?"  I said, "you tell me! When can we leave?"  He said, "I see no reason to keep you. You can go."  

So we packed up.  Elsie first got a bath.

And now we're on our way to Grandma and Grandpa's house!  Woohoo!!

Twenty days is a long time to live in a hospital.  We received wonderful care while we were there, but tonight we're thrilled to be leaving.  Thank you FL Hospital.  Thank you Ronald McDonald House. Bye bye!! Prayerfully we're only coming back for visits to show you how healthy our girls are.  

Slowly but surely

We're seeing good signs, and a few setbacks, in Elsie's recovery.  It's so nice to have her free from all those wires! After 24 hours the bandages came off.  She's been eating well and we hope to see more energy and more strength tomorrow.  One medication was keeping her lethargic and they stopped it today.  Pray for strength, especially for her right side which has been weaker than the left.  Pray her little body will get the right amounts of sleep and play and she'll be willing to start crawling and walking again when she's ready. We know how much she loves to move and we want to see it again.  And pray that the smiles start to emerge again too.  

Sleeping Beauty

This is how she looked most of today.  She did wake up a couple of times.  She's moving everything and was able to drink some apple juice and eat some Cheerios.  The rest is good for her and I got a nap too.

The doctors are saying the surgery went really well and all in all she's looking good.  Now we pray for a speedy and seizure free recovery! 

What a long day

We were woken up at about 6:15 to begin prep for surgery.  This includes a wipe down with special wipes, and disconnection from all those wires.  Poor little lady has been tethered to a computer for fifteen days.  Now she's free!

They brought us downstairs at about 7:15 and after explanations, consent forms and sleepy juice, they took her from me at about 8:30.  Dr. B explained that he didn't actually need to physically remove the bad tissue.  He just needed to disconnect it from the good tissue.  Disconnecting it stops the seizures and leaving it there allows blood and brain fluid to continue to flow through it.  It's better for Elsie and he said, "easier for me."  So that was good news.   

The morning wait wasn't too hard.  I took a walk, had a shower and breakfast with my dear friend.  Then I had some time alone to reflect and journal.  At about noon I got to conference briefly with the main epilepsy doctor.  She said that after the motor mapping they could see that the bad tissue was clearly in front of the motor cortex and not on it.  So, as long as Dr. B has steady hands, and we trust he does, her motor function should not be affected.  What a relief this news was!  

Mom and Emma joined me for the afternoon wait.  It was a bit longer, but with that good news and the eager anticipation of Mark's arrival, it wasn't too bad.  Emma was even able to rest in the middle of a busy lobby. 

Mark and my dad got here about 5 and we got to see Elsie at about 6.  

She's puffy from all the fluids they've given her.  She's on all kinds of medications tonight to keep her comfortable.  We actually haven't been able to talk with the surgeon or anyone from the epilepsy team post surgery.  So we're looking forward to a report from them tomorrow.  

Pray she rests comfortably tonight and doesn't have all the vomiting that she had after the other two surgeries.  

Tomorrow is the big day

Surgery.  One more.  Third and final.  For this hospital stay at least, and prayerfully for good.  

The team made the decision to do surgery without waiting for another seizure.  The reason for this is that there are three options:  1. keep grids in and keep waiting...hard on all of us, risk of infection and no guarantee of another seizure.  2. Take grids out without doing anything else. Seizures would likely continue and we would probably need to do this all again in the future.  3.  Use the info we have to do a resection, meaning take out the bad tissue that's causing the seizures.  Because they do have good data from the seizure right after her second surgery.

So this afternoon I met with the epilepsy team to discuss the plan for surgery.  Mark was able to join by phone, and he will join us in person tomorrow evening.  So thankful!!!  They explained that they will be taking out only the bad tissue that's causing the seizures, but there's a chance they will be very near the motor cortex.  If they come too close, she will temporarily lose function of her right leg.  They assured us it will come back, it's just a matter of time and therapy.  And it may not be an issue at all.  Hopefully, the bad tissue is in front of the motor cortex and not on it.  

So tomorrow morning beginning at about 8:00, they will take out the grids, take out the bad tissue, and complete the corpus callosotomy.  The first time because so many electrodes were in place they were only able to sever 2/3 of the "connecting bridge".  This time they'll get the rest. 

Pray for Elsie to be stable and strong through this surgery.  They say it should take five hours. But all in all she'll likely be separated from me about eight hours.  Pray that they can stay away from the motor cortex and that she will not have a motor deficit after this surgery.  Pray for steady hands for this gifted surgeon, Dr. B.  Pray for speedy recovery.  They tell me it's better because all those grids are out and the brain is less irritated.

We're looking forward to seeing her running around again.  She did walk around the foot of her bed tonight while I held all those wires.  She's a fighter.  And she has the God of the universe and the prayers of so many on her side.  Thank you.  

Hotdogs

Emma and I went to the nearest 7-11 to buy hotdogs this afternoon.  We were buying one for Elsie at the doctors and nurses recommendation.  No, they haven't gone crazy in their ideas of nutrition. They're trying everything they know to help Elsie have another seizure.  Apparently the nitrates in hot dogs and other cheap meats can trigger them.  This doesn't mean if you feed your kids these things they'll start to have seizures, but rather for kids with seizures, nitrates can help trigger them.  So I bought a few sticks of pepperoni too.  

Eat up, Elsie, we would really love you to have one last and hopefully final seizure really soon! 

My birthday

Well, it's the second year in a row I've spent my birthday in this hospital.  Let's not make this a habit, okay 2015?  

This morning Elsie helped me open presents, and then we got her on her feet. 

Then Elsie got some Grandma time while Emma and I went on a lunch date to Panera.  After over a week of hospital food...yummy!

The staff also came and sang to me.  I actually don't know many of the people in this photo.  But the ones who are taking care of us are amazing people.  Truly, so so good to us!

It was as happy as happy can be in a hospital.  It is hard, but I'm trying to find joy and be thankful for little things.  Like evening snuggles.  I don't get to hold her much.  She's hooked up to so much.  It was nice to just sit with her and rub her back and tell her how much I pray this will all be over soon.  

Pray for a seizure tomorrow or Tuesday.  We really, really would like her last surgery to be Wednesday, but they need another seizure first.  

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.