Wednesday, April 28, 2010

Abbie's Extreme Makeover

We drove to the hospital in the darkness on Monday morning, thinking we would be driving home with Abbie later that day, after a 3.5 hour surgery.  The picture began to change in pre-op, when we met with her surgeon, Dr. B.

He had spent some more time looking at her Xrays, and refining his plan.  In addition to releasing the muscles holding both thumbs to her palms, he recommended releasing the muscles leading to the middle and ring fingers to allow them to move more freely.  He mentioned he would be pinning these with temporary pins that he could remove in the office in a few weeks.  This was new, so I was digesting that when he added that as he released the thumbs there may not be enough skin to accommodate repositioning them because they'd been pulled in for so long.  The answer to that problem could possibly be skin grafts taken from her groin.  Another new aspect, and I was really not excited about this one.  But, I feel so blessed to have a surgeon in whom we can place our unquestioning trust.  So, I walked Abbie into the OR around 7:30, now knowing that the surgery would take closer to 6 hours. She was already asleep after so much early morning excitement, so the transition was easy.

Then, it was upstairs to begin the familiar wait.  The first morning after Abbie's initial injury I stood in that same cafeteria and determined that I needed to eat even if I didn't feel like it.  So, I decided on a certain breakfast that I would eat every single morning so that I wouldn't ever have to think about it again.  Mini-Wheats, a hard-boiled egg, OJ, a banana and water.  I reverted  back to my old stand-by, replacing the Mini-Wheats with oatmeal.  I thought I would see Abbie before lunch was over at 2.

Assuming we'd be going home, I'd not packed anything to stay overnight, so Ray and I dashed home at lunchtime, grabbed some things, picked up some sandwiches and hurried back.  It felt strange to leave the hospital with Abbie in the OR, but the sunshine was medicine for us, and I realized that a vigil doesn't have to be held in sterile, flourescent-lit rooms.  I was praying just as hard surrounded by palms and bougainvillea.

At 12:45 the OR nurse called to say that Dr. B. was finished with the hands.  "Um...OK, did he start with those?"  It had  already been 5 hours and her legs hadn't been touched.  This day was going to be even longer than we'd thought.

Lynette, Abbie's PT, had gone in to observe the surgery -- what a blessing.  I was thrilled when she called to give me an update and reported that Abbie had not needed skin grafts for her thumbs.

Around 4 the boys came up the hospital to wait with us (and to eat the grilled cheeses they love so much).  When the phone rang at 5 I was looking forward to the invitation to meet Abbie in recovery.  Nope.  "We are just starting on the left leg.  1.5 more hours."  I questioned the nurse to make sure I heard correctly "One and half more hours??"

Finally at 6:45 the surgeon called and asked me to come down.  He met me in the hall because they weren't quite ready for us in recovery.  I was thrilled when he said, "I normally don't say this, but this could be one of the best surgeries I've done."  Hurrah.  Our esteem for him multiplied exponentially through this experience.  Over 10 hours spent working on Abbie  without eating, drinking, or even using the restroom (Ray asked that question, not me:)!  I cannot fathom the skill, focus, and endurance that Dr. B. possesses, but am so grateful for it.

Abbie ended up spending almost 3 hours in recovery, as we did have a little bit of excitement.  But, once she got all her normal meds, which were now greatly overdue because of the length of the surgery, she calmed down nicely.  We made it to her room around 10pm.

They left an epidural in to keep her lower half numb, and we used fentanyl to help with her hand pain.  She did great.  After 10 hours on the table her lungs recovered nicely, and she was able to come off oxygen competely the day after the surgery.

All in all, Abbie got:  releases of three muscles related to the thumbs, pinning of the thumbs into a good position, releases of muscles related to middle and ring fingers, pinning of those fingers into a good position, Botox in her forearm and bicep, removal of her hip hardware (which we now's very impressive and looks like you could hang a good-sized shelf with it), removal of the rods in her femurs and placement of longer ones, releases of her glute muscles, and Botox in her quad muscles.  She also has two beautiful blue casts on her hands and forearms.  They look like clubs, so her brothers had better stay  in line.  They will come off, and the pins will come out, in 3-4 weeks.

We've ended up spending two nights in the hospital, which was a good decision, as her pain level seems much better today.  We look forward to going home very soon.

Abbie was giddy getting in the van with her Daddy and brothers early Monday morning - -what an adventure.  But, she became concerned and began to complain when we pulled into the hospital parking lot.  We have one little verse that she and I share during scary times, "When I am afraid, I will trust in Thee" -- Psalm 56:3.  I whispered this into her ear over and over on the way to her pre-op bed.  When I began to read our daily Psalms to her, a tear came when I realized 56 was on the list.  It was like hearing a favorite song just when you need it most.  God has been so gracious to us!

Thank you for your prayers - chalk up one more victory for Abbie's Army.  We have already seen the fingers on Abbie's right hand move independent of each other - something she could not do before. So, I look forward to some exciting updates in the weeks and months to come.

To God be the glory, great things He has done!

Tuesday, April 06, 2010

Homeschool Helper

After visiting the pediatrician today, we were able to reschedule Abbie's surgery:  April 26th.  We covet your prayers leading up to it,  as we have expanded the scope of the surgery a bit.

Abbie lost some weight during her recent illness, and the Botox we are planning to use in her arms is apportioned by weight.  The surgeon can only use so many milligrams of it  per kilogram of Abbie's weight.  There were three planned injection sites on each arm:  in the thumb area, on the forearm and in the bicep.  In trying to parcel out the limited amount of Botox, and looking at how stubbornly the thumb likes to lay on her palm, we agreed that simply injecting Botox into that strong muscle would not accomplish much.  We felt it better to use the available Botox at the other two injection sites and do a muscle release for each thumb.  This entails nipping the muscle and then putting Abbie in casts for a few weeks post-op to allow her thumbs to learn their new position.

The lower extremity work will still include removing the hardware from her hip surgery, and replacing the rods in her femurs with longer ones, but we have also decided that since the surgeon will be right there, releases of the gluteal muscles would be helpful.  He did this during her hip surgery 1.5 years ago, but said that he "undercorrected" them, because he didn't want to overdo it and have her end up with contracted hamstrings.  That is definitely NOT a challenge for Abbie, so he is going to loosen them further now.  This will make it easier for her to sit up straight.  She can do it now, but as soon as we seat her she scoots her bottom forward and rolls her sacrum under so she ends up sitting in a horrible position.  She won't need any casts on her legs, thank goodness!

She is getting back in the swing of school, and worked very hard for me today.  I had the voice output portion of her switch sitting on the floor near her chair.  As we began doing reading, and she was consistenly using the switch to answer questions, Panda became very curious.  He figured out that he could press the switch with his nose to have it say "yes."  Abbie and Panda both got a kick out of that!  I think she liked having a homeschool helper today.

Because we want Abbie to recover completely from her illness, and want to avoid exposing her to any other bugs, she will not be attending school before her surgery.  Afterwards, with casts on both arms, and sore legs and bottom, she will not be ready to go back to school for several weeks.  That basically takes us to the end of the school year.  The school has offered something called "Home Hospital Instruction" while she is out, but it's only 3 hours a week.  We have gotten into a good routine lately, and I think adding in a tutor for only three hours a week would cause more upheaval than it may be worth, so we'll continue schooling on our own for now.

We had a full, wonderful day on Easter.  I hope to post some pictures soon.  We were blessed with much delicious food, many good friends, and the joy that true freedom brings.

May God bless you today!

Thursday, April 01, 2010

Brave Little Soul

Leaving Seattle, we thought Abbie had turned the corner and would be back to her spunky self in short order.  Not so fast.  Her fever began rising again, and the diarrhea returned.  Her pediatrician explained that this bacterial infection can flare and recede for 30 days or so...ugh.

In light of her current health, her orthopedic pre-op appointment yesterday resulted in us postponing the surgery, again.  We had planned to do it in February, but then her leg was broken.  We are hoping that this will only be a 2-3 week delay, and given her recurring fevers, started her on Zithromax yesterday.

She seems a bit better today, and is really doing well with her physical workouts.  Schoolwork is a whole 'nother matter.  She just doesn't have the energy to engage right now, so I've been letting her rest.  Math and reading will always be there.

It warmed my heart when Abbie's nurse was asking her about Spring Break.  What elicited the biggest smile was when Abbie was asked if she got to see Chase.  She loves that brother so much, even now that he is gone for much of the year.

I'm a huge chat group lurker, and recently on one of them was a story that captured the vision I've had in my mind for many years.  I've long known that it was Abbie's choice to come back to us, and pictured her bouncing up and down, arm raised as high as it would go (probably held up by the other arm), pleading, "Me, me, me -- pick me.  Abbie can do it!"  (She still often referred to herself in the third person).  Jesus smiled down at her, knowing full well what she was made of, and granted her wish.
This is the story:

 The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed.  Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

While we do wait for Abbie's full restoration, her miracle has already happened.

We look forward with much joy to celebrating Easter -- the confirmation of our hope.  I pray that you have a wonderful time of both reflection and celebration as well!

He is Risen!