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.