Looking Back to Look Ahead

2012 was a really rough year for our sweet Toby.  In some ways, I was so thankful to say goodbye to 2012; and greeted 2013 with open arms.  Over the past month I've been going back and reading Toby's caringbridge site from start to finish.  The main reason has been to organize all of his medical information - I've been typing up spreadsheets by year - recording every doctor visit, test, x-ray, ER visit, diagnosis, surgery, hospital stay, therapy session, nursing visit, etc.

Am I crazy?  I just might be.

It's actually been therapeutic and helpful to organize all the information.  This way, I'll have it on hand for that next surgery or doctor's appointment.  It's also been amazing to see how far God has brought us - and Toby.

It's also difficult to look back.  After we've had a rough spell, I prefer not to stop and think about what happened or how bad it really was or could have been.  It's time to look to what's ahead - keep moving forward.  I remember seeing this saying on a runner's shirt that said, "Never look back unless you are planning to go that way."  (Henry David Thoreau, I believe).

The reality of Toby's next surgery is starting to hang like a dark cloud over my head.  We are anxiously awaiting the call from the doctor's secretary to give us a surgery date.  Over the past two months, I've blissfully been in denial and able to put it out of my mind.  Toby's back is healed, and so I have chosen not to think about what's ahead.  Just the other day Toby said, "Mom, I just wish my back was straight again."  I want it to be straight too, I'm just not ready to live through another surgery, hospital stay - I want to be on the other side of April, well into May or June looking back and seeing a "whole" Toby again.  I get weepy if I think about it too much.

He's been so independent these past few weeks.  We have been blessed with a wonderful new day nurse that is patient with Toby.  She includes him in his care - he is learning to do his own trach care, g-tube care, cathing, etc.  He's getting dressed and undressed on his own (well, when he's really motivated).  He's using his transfer board - getting in and out of bed to his wheelchair and back again.  It's been wonderful.  This surgery is going to change all of this.

Lately, I've been hearing Toby say this, "When I get bigger and don't have my wheelchair anymore, I'll be able to ________ (do such and such)."  He thinks he'll out-grow his need for his wheelchair.  He also thinks that every surgery he has will fix his body so he can walk.  Some days, I gently explain that on this side of heaven, he may never be able to walk on his own - he'll always need braces, a walker, etc. Other days - like today - I just let it go.  I don't like shattering his view of reality, life will do that to him soon enough.

Here is a picture journal of our fall.  Warning - there is a very graphic picture of what Toby's wound looked like below, so you may not want to look ahead if you have a queasy stomach or can't handle the site of blood/flesh. 

October 23rd, 2012 - Spinal cord untethering.

November 13th, 2012 - First VEPTR Insertion

Look at that boy - so straight and tall

November 28th, 2012 - Wound Vacuum Insertion (Warning - graphic photo of progression of Toby's wound from beginning through healing process)

 (Left to Right) 1.  Wound right after they removed the rod and took cultures 2. Wound with the vacuum attached.
3. Healing  4.Completely healed

December 11th, 2012 - Left VEPTR popped off rib cage, then surgery to remove all rods.  I've never seen him in that much pain.  He could barely make it every 4 hours for the next dose of narcotics.

I have no idea what this next surgery is going to hold for Toby or for us.  I know that God is God yesterday, today and tomorrow.  He already knows and is faithful.  Today, I am taking the time to look back and focus on God's faithfulness, and how He carried us through - knowing that His character does NOT change, and He will carry us through whatever lies ahead.

Answered Prayers

Note from author:  So, it's been awhile since I've posted on my blogs (there is another one).  I have yet to figure out how I want to handle both of them.  I feel like this one A Joyful Journey, needs to be more about family - sharing photos, and updates, etc.  The other one "My Life as an Oxymoron" is how God is teaching me.  I'm still figuring it out, so that's why there are two posts today in two different blogs.

I can't begin to tell all of you how much it meant these past few months to have family and friends storming the throne of grace on our behalf.  Our fall was really rough - so rough I feel like I'm still recovering from it all, then Christmas and New Year's.  It's one reason why I haven't posted a new blog entry since November 30th!  The messages from family and friends that told us they cried when they heard the news about Toby's need to go back into surgery again and again and again.

"I am crying for you, Carrie"

"I am spending time on my knees for you today."

You do not realize what it means to have others sharing in our burdens asking for ways to help - sending texts or continually asking what we need.

It's a humbling place to be in.  I'm a fairly independent person, and it's difficult to depend on others, especially without any foresight as to how we can give back when we are in such a needy place, and may be for awhile.  I don't like being needy at all.  It's a struggle to always be a "taker" when you are wired to be a "giver."

I do have to share this amazing story about how God cares about the little things.  In the middle of the fall chaos, everyone was asking us "How can I help?"  Of course my house was not as clean as I would like (I tend to be pretty picky about it, though), but it's hard to ask someone to clean it, especially when there were week long breaks in between hospital stays when life was somewhat normal.  I just didn't feel up to cleaning very much.  Of course, I can clean it myself, and I did, but I'm one of those people who LOVES to have their entire house clean.  I function better, and am able to lay that stuff aside to do fun things (read this other post to understand why I am wired so strange!)  I am okay with asking for help with meals, but it just feels strange asking for something so personal.  Not to mention, it's humbling.  I am always afraid that our life group at church will see us coming and run the other way because we are always so "needy".

So, I began to pray about the house cleaning - telling the Lord, what I just told you.  Asking Him that if this is something we really needed that He would just provide it without my having to ask.  Again, I never felt like I should ask when I can very well do it myself!  Then, a friend showed up at my door one night and said, "I hope you don't mind, but I was thinking about what I would need if we were in your situation, so I thought of this.  I know a lady that cleans several of my neighbor's homes, and she's going to stop by at this time one day to see what you need done, and then this time on Friday to clean your home.  Here is her number if these times don't work."

After she left, the tears began to fall, because God is very good.  He showed me again that He cares, even about silly things like my need for life to be neat and orderly when the rest of it is in shambles.  This friend had no idea that she would be answer to my prayer, but she was.  It has taught me to always obey God's calling at the moment He says to send a text, or an e-mail of encouragement.  To make a donation for someone's adoption, etc.  You never know when you might be answer to someone's prayers!

So, this is my thank you post to everyone who has supported us these past few months.  We are thankful for all of you!

Did He Really Mean Everything?

Over the past few weeks, I have been contemplating thankfulness.  What does it truly mean to be thankful?
I chuckle to myself, as I am often quoting Philippians 2:14 to my kids "Do everything without complaining or arguing."  No one had to teach my kids how to complain or argue.  As soon as Conor learned to speak in complete sentences he was negotiating with me, and I think he was 20 months old.  As they have gotten older, they are even more skilled at complaining and arguing.  I have been trying to teach them thankfulness with our "thankful tree", and in various other ways, but then I was convicted.

This still small voice asked me:

"Do you model this for your children?  Do you complete every task without complaining or arguing?  What about the small "grrrrs....." your children hear?"  (I'm not always particularly fond of that still small voice.)  I realized that when our kids groan when they are asked to do chores, they are copying what I model many times - expressing frustration, angst, over trivial things.

So, today I went back to read the passage in Philippians.  "Did God really mean to do everything without complaining or arguing?"  I think I would have to say "yes" - it means everything.

During our time with family in Michigan for Thanksgiving, I realized how frequently I express my angst and frustration out loud at silly little things:

traffic,
the kids' rowdiness,
drying dishes that weren't clean and getting salad dressing on the dish towel,
the wireless internet not working,

I remembered the verse and realized that I'm not a very good example to my children, and the verse does say - Do everything without complaining or arguing.  The chapter goes on to say, "so that you may become blameless and pure, children of God without fault in a crooked and depraved generation, in which you shine like stars in the universe..."

How am I shining light to others (especially my kids - because they see the real me)?  Is it through gratefulness?  I have to be honest, that personally I tend to weather the bigger trails alright, I struggle more with the the every day little things that I can control.

As I think on this even further, I realize that having an attitude of thankfulness means having an eternal perspective.  All of this stuff on earth will not last.  Laying up for ourselves treasures in heaven is what matters most.  As a saved believer in Christ, I (we) have HOPE - the ultimate HOPE of heaven.  We have salvation from our sins - we didn't have to die on that cross and suffer the ultimate penalty.  Jesus died in our place.  Even if we face death ourselves there's still hope - nothing we face, nothing is so bad that can take away that hope.

I sometimes feel that because of the many trials we have suffered with Toby, I have a right to complain - or eat more chocolate, or get a massage.  I have a right because I've suffered.  I might get someone angry for throwing this next thing out there, but when people say "Oh, no one should ever have to go through that.  No one should ever have to watch their child go through that."  Why?  What makes us so special that we deserve to never experience any type of hardship?  I honestly don't have an answer, but know that in our circumstances, if we had not gone through our times with Toby, I would not have learned to rely on God, trust Him, know Him intimately - His faithfulness, love and mercy because I would be relying on myself.

Jesus didn't deserve to die on the cross for sins he didn't commit.  He didn't deserve to leave heaven's perfection to be a man, and subject himself to being a human?  If anyone didn't have a right to experience sorrow and hardship it was Jesus.  He was led like a lamb to slaughter and yet He spoke not a word.  I have often wondered how martyrs can face death with such courage and bravery, and choose not to denounce the name of Christ or salvation.  How can they choose to die for their faith?  I think part of the secret is having an eternal perspective; this life is a vapor, and heaven is waiting for us immediately after we close our eyes in death.

Now let me throw in a bit of a disclaimer here - I don't think that the verse means that we never grieve, have sorrow, sadness, or even express constructive criticism in ways to improve various things.  It's the attitude of the heart and having an attitude of thankfulness.  I could go on and on about how we are blessed to live in America, we are so rich compared to other countries, but I won't - just to say this.  The fact is, we are blessed, our "needs" are usually not necessities.  If you have a chance, click on my sister Lynsey's blog and hear about living 3 months in Nicaragua - trust me, you'll never complain about doing laundry again!

In an effort to teach my kids not to groan, complain and mumble about having to do simple chores, I'm trying to model it in my own life.  When tempted to get bent out of shape because someone spilled sticky juice in a dripping trail across the floor, I try to change my mind-set and be thankful for having juice to begin with or clean running water for that matter, I am healthy enough to kneel on the floor to clean it up, I have children to make the messes and the list goes on and on.

I just finished reading this wonderful fiction book by Lynn Austin about three Swedish sisters that immigrate to the United States.  In the book, Sofia sings this wonderful old hymn - I will close with a few verses from the song: "Children of the Heavenly Father"

Children of the heavenly Father, safely in His bosom gather;

Nestling bird nor star in heaven, such a refuge e’eer was given.
God His own doth tend and nourish, In His holy courts they flourish

From all evil things He spares them, in His loving arms He bears them.

Neither life nor death can ever, from the Lord His children sever

Unto them His grace He showeth, and their sorrows - all He knoweth.
Though He giveth or He taketh, God His children ne’er forsaketh;
His the loving purpose solely, to preserve them pure and holy.

Wow, and that's reason enough not to complain.

My Mom - A Tribute!

I know that in writing this blog post, I'm probably going to embarrass her, but I just have to post it, and hope she'll forgive me later.  :)

Today, I need to write about my mom.  I am the oldest of three girls, and growing up I was a pretty independent, strong-willed, want my own way kind of kid.  I've always been headstrong, and when an idea gets into my head, it's pretty hard to change my mind.  (Hmmm..after typing that I realize where Caris gets it).

Between my mom and my two sisters, we have always had a close relationship.  Oh sure, we locked horns during the teenage years, I really liked to argue and be in charge.  Mom was always reminding me that she was the mother NOT me!  However, one of the biggest reasons why our relationship has withstood through the years has been just that - our parents taught us how to have open honest relationships - not perfect - but real.  They taught us how to be real with God, how to build our lives on the truth of God's word, and how to relate to each other.  My mom was always there, willing to talk, never too busy to sit in our room at night and discuss all of our triumphs, joys, and sorrows.

My mom is one of the most self-less people I know.  Through the births of all of our babies, she's been there.  Sometimes speeding through the 270 mile-trip to make it to the hospital just in time.  If mom's coming for a stay, you can count on the fact that she will cook, clean, do laundry, and clean - did I mention that my house is always clean when she leaves?  She's a gem!

After Toby was born, it was evident that we would need help more than ever.  He was in the hospital almost the first three months of his life, and my parents were there - either caring for Conor and Garrett at our house or taking them home to Michigan.  So, over the last month with both of Toby's surgeries, my mom has come again.  It was especially difficult this week because not only was Toby in the hospital, but both of my grandfathers have been in the hospital.  My Grandpa Fabian (my dad's father) had a major back surgery October 22nd, and my Grandpa MacGillivray (my mom's father) had his hip/knee replaced in two separate surgeries after the titanium rod just broke in two a few weeks ago.  Both of them have had a really rough road, and I can't imagine how hard it was for my mom to leave them to come to Ohio to help us.

I appreciate her help more than I can ever express.  Even though, we always have plenty of offers to help with the kids while Toby's in the hospital, it's hard to take up the offers when it would mean organizing dozens of people at various times, remembering who is supposed to be where and when while we stay at the hospital with Toby.  With my mom coming down, she's able to stay - keep the kids on their consistent schedule, and help maintain their normal lives - practice, homework, school lunches, etc.   One goal I've always had through this journey has been to keep things at home as peaceful as possible with the other children, so they aren't affected as much by the upheaval.  My mom allows us to do that.

She's had to give up a lot - change around her work schedule, although flexible, it means doubling up on her jobs in different weeks.  She gives up time with her husband, spending money on gas to travel, missing time with her own church activities to help us, and this time she's also been needed by my grandmothers to help them.

And this is the point where the tears begin to fall....If I could describe her, I would have to say:

Selfless, Loyal, Faithful, Servant, Loving, Kind, Full of wisdom...and the list goes.

She's an example to us and so many others of the Proverbs 31 woman: (vs. 25, 26, 28a, 30)

"Strength and dignity are her clothing, and she laughs at the time to come.  She opens her mouth with wisdom, and the teaching of kindness is on her tongue.  Her children rise up and call her blessed...Charm is deceitful, and beauty is vain, but a woman who fears the Lord is to be praised."  

I know I can call her for advice, she always listens when I need her, and sometimes just need to vent.  She also has amazing wisdom - someone that is willing to give me parenting advice in gentle ways, without being judgmental.  I appreciate her wisdom and the loving way she imparts it.

My only desire is that I can be a mother just like her, and I fall so short.

Looking back over the years, I can also see God's provision in an amazing way.  My parents were really young when they were married (really young) - facing an unexpected pregnancy they had many options, and yet they chose life, marriage, and then chose God.  I was that unexpected baby, and I'm so thankful they chose life.  They've been married 35 years, and though it hasn't been easy, they have allowed God to mold, break, cleanse, and change them - not willing to be stuck in their ways - but used by God - clay in the Potter's hands.

A few months ago it hit me that even in the middle of hard circumstances 35 years ago, God was making provision.  He knew that I would need young parents to help us during these times with Toby - to have energy to play with our kids, run them to practice, and help take care of us.  I'm so thankful that indeed "All things work together to those who love God."  He can take any circumstance and use it for His glory.

So, Saturday, Nov. 24th is my mom's birthday - and in a way to honor her, I write this post.  Thank you mom for all you've done, for all you do, and all you are.  I honestly do not know what I would do without you - and am so thankful to God that He gave me such awesome provision in your servant's heart.  I love you, and pray that God will use me in the lives of my husband, children, and others to bless them the way you have blessed us.  My prayer is that I will be able to imitate you in some small way.  Happy Birthday - I love you.

The Columbus Marathon

October 21st was a big day for Toby and our family.  This year the Columbus Marathon/Half-Marathon named Nationwide Children's Hospital as the beneficiary of the race.  It coincided with the opening of the new hospital, and for each mile there was a patient representative that cheered on the runners and raised money for the hospital.  Toby was chosen to be Miracle Mile Patient #7.

Last October was my first time running a half-marathon.  I have been running since 8th grade track, and I really do enjoy the long distances.  Over the years I've done a few 10-milers, a 30K (which is 18.6 miles), and then finally a half-marathon.  I chose to run last year for many reasons, but one of the biggest was to raise money for Momentium.  All the money raised goes to support crisis pregnancy centers in the area in which you live, supporting women and men to choose life when faced with an unexpected pregnancy.   The great thing about Momentium is any one can run/walk a race in any state, at any time and set up a fundraising page to raise money for their local crisis pregnancy centers.  It's an amazing program!

Even before we knew about the NCH Marathon this year, I had chosen to train to run it again and raise money again for Momentium.  Then, they approached us about Toby being a Miracle Mile Patient, and the race took on another special meaning for us.

My family came into town for the race, and we invited everyone to come join Toby to cheer on the runners.  His mile was decorated in green with t-shirts and lots of signs.  Toby's shirts said:

"Where There's a Wheel, There's a Way"
Toby's Warriors (Phil 4:13)
(On the left is Toby's teacher's aid at school - Kim!)

I heard this quote at the National Spina Bifida conference this year and knew it should be the theme for the race.  We also added "Phil. 4:13, which is the Bible verse that says, "I can do all things through Christ, who gives me strength."  We are often quoting this verse to our kids and especially Toby because God can give us the strength to do all He wants us to do!

Some of our signs said:
"Do, or do not, there is no try." (Yoda from Star Wars)
"May the Course be with you!" (Another Star Wars quote)
"Reach for the Stars, Run Hard."
"Thank you, NCH and Runners."...and many others.

My youngest sister Shauna also came with her family and ran the race with me - this would be her first half-marathon.  I tend to be pretty competitive, so my goal was to beat my previous time from last year.  Unfortunately, it seemed there were a lot of obstacles to this - I had been fighting illness and chest pain from a very stressful week (preparing for Toby's upcoming surgery two days after the race), fatigue, two nights of interrupted sleep, less training than last year because of time constraints, but God truly gave Shauna and I the strength to finish strong.

The day of the race was chilly.  I was so thankful for Bruce, my mom (my dad couldn't make it because of his work schedule - such a bummer) and Bruce's parents as they were able to get the kids ready to leave the house by 6:15 a.m. to make it to the mile before the roads began to close.  As you'll see in the progression of the photos - it was quite dark when they arrived!  Many friends and family came out, braved the cold and even brought their kids to join with Toby in cheering.

Bruce said Toby loved it, and they counted he probably gave out about 1,000 high-fives.  People stopped to give him notes, flowers, and hugs too.  I stopped and kissed him and the other kids on my way by.  He was our half-way point, and it really helped us to stay motivated till the very end. 

In the end, Shauna and I finished strong.  We kept each other going, even stopping for a potty break and lots of high-fives along the way, we beat my time from last year by over a minute (under the 2 hour mark).  I know that it wasn't me, it was God giving us the strength to get through.

At one point I saw this verse on other runners' shirts: "Hebrews 6:19 - We have this hope as an anchor for the soul, firm and secure..."  Awesome reminder of the hope that we have in Jesus Christ.  He has been our anchor through so many trials.

My sister Lynsey also sent me an e-mail reminding me of these verses:

“Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance and the sin which so easily entangles us, and let us RUN with ENDURANCE the RACE set before us, fixing our eyes Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.  For consider Him who has endured such hostility by sinners against Himself, so that you will not grow weary and lose heart.”  Hebrews 12: 1-3

She reminded me of how training for the race, also had prepared me for Toby's surgery two days later - and the marathon we are running in life.  We do not have to grow weary and lose heart because our hope/anchor is in HIM - fixing our eyes on Jesus!

Thank you to everyone who donated, participated, prayed, and made Sunday such a special day. 

Our Crazy Life

Soooo...as of this moment, surgery is scheduled for October 23rd at 8:30 a.m.  We met with neurosurgery last week, and Toby does need the detethering done before they put the rods in.  We looked at the MRI results, and he has a huge syrinx (fluid filled cyst) in his spinal cord, which could be as a result of too much fluid in the ventricles of his brain (i.e. still needs a working shunt) or the need to be detethered. After much discussion, we have decided to also do a shunt revision with the de-tethering.  We will never know whether the issues Toby has had are related to the ETV not draining enough cerebrospinal fluid from his ventricles, so this is our opportunity.  Essentially he will have two surgeries in one - #13 and #14 - but same anesthesia time.  

I'm nervous to say the least.  I realized later that twice after Toby's had surgery on his spinal system his sodium has dropped and we've had issues.  I really don't want to experience another 4+ hour convulsive seizure - I called the NS nurse on Friday and expressed my concerns.  She assured me that they will monitor his fluids really closely, and I'll probably push for getting his sodium checked after he's released from the hospital just to be sure.  I feel like if something happened, it will be on my shoulders, because I was the one that asked the doctor if we could do the shunt too.  He just hasn't been the same kid - after thinking through it, he ultimately made the decision to go ahead, but it still makes me nervous. 

After all of that, I have been considering what will happen to this scheduled surgery next week if the orthopedic surgeon decides not to do his back surgery by the end of this year.  If you remember he's been on vacation, and has no clue what has transpired these past few weeks.  It doesn't make sense to de-tether the spinal cord if we delay the rod surgery because scar tissue will form and he'll just need the detethering done again. 

SO, after all this planning, etc. everything could change.  I'm hoping/praying that it doesn't.  I have grieved through these surgeries, and now am ready to have them done, complete, and for Toby to be able to heal and move on - so pray that everything continues to fall into place.  We are moving forward as if surgery is October 23rd.  We'll see!

So, we have a lot going on right now.  Toby had an appt. with the his regular surgeon today - to get a new feeding tube.  It's called a Mini-one Balloon Button.  It's smaller, flatter, and skinnier than his other Mic-Key button, and hopefully will be better for him.  After the appointment we went to the lab to get blood drawn for all the pre-op stuff.  It was tough - they couldn't get the vein on the first try, and Toby was a crying hot mess!  He had an autonomic response - ears turned red, face, sweating profusely.  Thankfully, they got it on the second try, but afterwards he was exhausted and fell asleep in the van on the way home.  I think this is because his blood pressure drops when his autonomic system is under stress, and then he just fell asleep.  He is better tonight.

This week Toby also has a pulmonary appt., a complex care appt., and we are trying to stay healthy through all of this.  I also have to take Caris for an orthopedic appointment.  I think she might have a leg length discrepancy, and so we are just getting it checked to make sure her hips/legs are okay.  

Sunday, is the Nationwide Children's Hospital Marathon/Half-Marathon.  We are making all the plans for Toby to cheer the runners on, and my sister Shauna and myself are running the half-marathon (it will be her first and my second).  I'm excited for most of my family to come in for a visit, but we have a big week, a bigger weekend, and an even bigger week next week.  Did I mention that Toby's IEP meeting is Monday?

Whew - we surely covet your prayers through all of this - and for mommy to stay healthy and sane! :)

Some Answers

It's taken me a few days to process everything from Toby's MRI on Thursday.  Toby also had a GI appointment this week, so let me start there, and hopefully I can sort through everything. 

(P.S. If you follow Toby's CB site - this is the same post, so I'll save you some time by posting that here instead of you having to read the whole thing!)

GI appointment - This was a follow-up to discuss how the motility medication was working.  Toby is taking flagyl 7 days a month to stimulate his motility and improve his belly distension. It is helping.  His belly still gets distended, but it's not nearly as bad as it was.  We have also been able to cut down to a bare minimum dose on the cyproheptadine (or periactin) for his appetite stimulant.  We played with it quite a bit a few months ago and have it down to where it it still helping him to eat what he needs in calories, but not have the side effects that we were seeing from it. We also discussed the MACE vs. cecostomy with the GI doctor, and also asked about a motility study.  A few weeks ago in Myelo clinic, his developmental pediatrician had mentioned that before they do the bowel surgery they typically like to do a motility study to see if the kids will be continent, and if the surgery will be effective. I like that idea just because we've had so many issues with motility. GI doctor said he wouldn't recommend an in-depth study, the fact that the enemeez enemas work as well as they do, and he's fairly continent in between is evidence that the cecostomy/MACE would be good for him.  When we get closer to doing that surgery (probably next spring/summer) we can do a sitz marker study. Basically, Toby would eat some markers that I believe have barium in them, then they take x-rays and see how fast his digestion progresses.  I really like the idea of this study - had heard about it at the National SB conference this year, and just makes sense to me.  Nothing earth shattering, but a good follow-up.

So, on to the MRI...

We were instructed to arrive at 8:00 a.m., no food after midnight, and clear liquids up until 7:30 a.m.  The MRI was scheduled for 11:15 a.m.  Afterwards, Toby would be discharged (he has to be technically admitted to pulmonary floor so they have a ventilator for him when he wakes up after the anesthesia in the PACU) and we would head over to meet with the neurosurgeon to discuss results and possibly surgery.

I have learned that nothing at the hospital EVER goes as planned. The MRI didn't happen until 2:15 p.m., and then the neurosurgeon ended up having to leave early so he stopped by the waiting room to discuss what they had completed so far (his brain), and told Bruce he would call me on Friday.  BECAUSE, I wasn't in the waiting room when he called.  I have met a wonderful new friend who's son has Spina Bifida, 22q syndrome, a congenital heart defect, and might be getting a trach next week. (Please pray for them).  Little Aiden has been through a lot, and he was in the PICU on Thursday, so I snuck up there to visit and talk to his precious mommy.   But, I missed the doctor, which was so frustrating because I wanted to walk away on Thursday with answers, a surgery date, and everything wrapped up in a nice neat package WITH a bow!  That didn't happen, and I should expect that by now, 

I'm so glad I visited Aiden and Kayla, realized that even if I had been in the waiting room it wouldn't have changed anything.  They hadn't even scanned his spine yet, so the NS wouldn't have had many answers anyway!

Deep Breath!
Are you still with me?

So, the doctor called on Friday, but I missed the call (of course). I called the NS office back, but of course there are no live people that actually answer the phone.  I tried the doctor's secretary, and his nurse (I have both of their direct lines memorized - go figure) and got voice mails.  I paused a moment to take a breath and got the bright idea of calling the main hospital number and to ask for Dr. G - directly.  Guess what?  

I was connected  - pronto, and we were able to have our long conversation, all questions were answered, and we have some dates scheduled!!

Quick synopsis of MRI:
Brain and ventricles - look great, in his opinion the ETV is working, even though we don't feel like he is totally back to baseline or what he was before the ETV/Seizure, in the doctor's words "He's safe!" For now we will let this go.

Spine - He's tethered. We knew this, all SB kids are tethered.  He has a tethered cord in the S1 region, and a pretty large syrinx (fluid filled cyst in the actual spinal cord).  He also mentioned there is a sac of fluid where he's tethered.  Before they do the VEPTR surgery (growing rods to correct the scoliosis), Toby will need a spinal cord detethering.  They don't like to put the rods in while they are tethered because as the back grows and is stretched, the spine/cord are also stretched and can cause more scoliosis and neurologic damage.  He even went so far to say that sometimes the orthopedic doctors end up having to take the rods back out, so we will do the detethering first.

The other part of this was clarifying some things that I have been wanting to ask for a long time.  One of the most commonly asked questions in the SB world is what is your lesion level?  This means where was the break in the spine, and what muscles/nerve function did it affect?   Here is a link to a photo that describes some of it (hopefully the link works).  We've always been told that Toby's level is L3/L5.  Bottom line - Toby's lesion is about that level, but his actual function is L1/L2 because he can move his legs from his hips, but that's it.  He has no quadricep muscles, and can't move his legs from his knees.  So, when they do the cord detethering they typically cut an incision above where the spine is tethered, and then work to separate it and all nerves from the scarring, etc.  The fact that Toby's level of function is much higher than where he's tethered means even if something goes crazy wrong in surgery - it shouldn't affect his function (because he doesn't have much).  I look at this positively and also want to cry because I wish he had better function than he does.

The biggest risk of surgery is CSF leak.  He mentioned that if he can't get the back closed back up properly because of leaking fluid, he will put a lumbar drain in for a few days.  Spinal fluid and a healing incision don't mix well. The surgery will last at a minimum of around 6 hours - and he even broke that down into time frames for me - anesthesia, hooking up electrodes/monitoring wires, actual incision, detethering piece, closure, and the anesthesia piece.  It's possible he will need to be in the PICU because most of the nurses on the pulmonary floor (where we always have to be) aren't comfortable with neuro stuff/lumbar drains.  He is going to ask if maybe a few neuro nurses could float to pulmonary so he doesn't need to stay in PICU most of the time.  We will see.  
We have an appointment this week to see the MRI pictures (I love this about Dr. G) - he pulls things up on the computer and explains all the detailed MRI pictures.  He will also examine Toby.  Surgery is tentatively planned for Oct. 23rd - they were working on putting the request in late Friday, so we should get an actual surgery date this week.  These dates are perfect for us because Toby can still participate in his Miracle Mile for the Nationwide Children's Columbus Marathon/Half-Marathon on Oct. 21st.  My sister and I are running the half-marathon, and my parents are also coming down from Michigan, so Grandma Fabian can stay afterwards to help out while Toby's in the hospital - planning on about a week stay.

About 4-6 weeks later, probably the beginning of December, Toby will have his rod surgery on his back.

Another deep breath - whew!!  

Still with me?

I felt much better on Friday after speaking with the doctor, and having a bit of a plan.  I just needed to be Patient!