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!

Let's Get On With It!

Yesterday Toby had the full MRI of his brain and spine.  We were admitted to the new hospital pulmonary floor.

Arrival at 8 a.m.
Scan at 11:15 a.m.
No food after midnight
No drink after 7 a.m.

Actual scan wasn't until 2:15 p.m.
Arrival home at 6:15 p.m.
No food for almost 24 hours
No drink for 9 hours
Poor baby
Long day
Toby was whipped

So, the new hospital is just beautiful.  Every room has this wall behind the bed that changes colors and looks like an outdoor scene.

We had a great view of downtown Columbus.  This photo was taken out of our window!

There are two flat screen televisions - a small one by the bed for parents, and the large 42-inch screen for the kids.  Toby enjoyed watching movies on the Get Well Network (it's an interactive program that allows you to play games, watch movies, and also do any educational type things that you need with your child).  Toby was in rare form yesterday - laughing and being silly.  He had two great nurses that just fell in love with their "Miracle Mile Patient".  When we left both of them walked us all the way to the van - his entourage! :)

So, I had been preparing Toby for this day and we've also been discussing his future surgeries.  For the first time he remembers being in the hospital this past March/April when he had his ETV and his major seizure a week later.

March 17, 2012

He always asks me if he will have to stay or will he be able to go home afterward.  Then, he cheers when he finds out he doesn't have to stay.  It's definitely getting harder emotionally to do this!  We had a great laugh in the van, though, because he asked, "Mom, do you remember when I told the nurses that you were in the potty?"  At first, I had no idea what he was talking about, wondering if he was talking about something at home with our home care nurses.  Then, I remembered that this was something that happened his last stay and he remembered that.


You have to understand that for the first time Toby is remembering things and talking about them.  Mentally, physically, and socially he is maturing and this is so encouraging for us to see his conversational skills expanding.  The mere fact that he does remember the last stay, something that happened, and that he asked me about it is AMAZING!

We sat in the O.R. waiting room for awhile, and then I decided to go and visit a new friend whose son was inpatient. While I was away, I missed our neurosurgeon stopping by.  He had to leave early, so he stopped by and spoke with Bruce and then left.  Bummer!

Bottom line - Toby will need a spinal cord de-tethering surgery.  The doctor looked at what they had scanned so far and said his ventricles looked good, and it appears his ETV is working.  They were still scanning the spine, but the fact of it is (and I've known this for years)...all kids with SB have tethered spinal cords.  It was interesting this year at the National Conference to sit in one of the sessions and see how low in the back our kids' spinal cords are compared to other healthy kids.  It's pretty low.  After initial back closure surgery, the scar tissue (which helps the healing process) adheres to the spinal cord.  Putting the rods in for the VEPTR are going to stretch him out and also stretch his cord, so they need to release it.  I was expecting this, preparing for it, but it's still not easy.  Toby's back scar isn't pretty - it stretches across his entire back and is a jagged diagonal scar.

This is Toby's back scar, and that red mark is from his night-time brace, which is why I knew that his scoliosis was getting worse and he would need rod surgery.  

He also develops scar tissue quite readily, we know this because of his prior surgeries and his bowel obstruction last fall, which was a result of internal scar tissue adhering to his intestines.

The surgery makes me nervous.  This will be surgery #13 and #14 for our Toby.  He's been through so much, and the release can be pretty complicated.  I'm expecting it to be complicated.  I was also so frustrated yesterday because
A.  I missed talking to the doctor - he spoke with Bruce, but I didn't get a chance to ask all my questions.  B. We didn't walk away with dates on my calendar.  I wanted to walk away with dates!
C. I'm having to wait again.

Now, that we've accepted that he needs these two surgeries - I just want to get them scheduled, completed, healing done, and move on with life.  I want to be able to PLAN!  Planning is what I do best, but instead we have to wait..and wait some more.  I'm ready to get on with it.

God continues to teach me that it's HIS timing.  This is not in my hands, I can't be in control, and waiting is what we need to do right now.  It's tough waiting.  Did I mention I don't like waiting?
We have several pre-op appointments, and scheduling through the hospital is never quick or easy.  The orthopedic surgeon really didn't want him in-patient during cold and flu season, and we will be smack in the middle of it.  The neurosurgeon thought the de-tethering would be end of October, with VEPTR around the beginning of December.  There are holidays to plan around, childcare to arrange, others are waiting on this to get their own schedules fixed in place.  But, then I look back earlier in the week to Monday when we didn't even have an MRI scheduled.  Three days later, the MRI is complete, done!  God's timing is not my own - He continually reminds me of that.  I can't control everything is lesson number 2 - and His plan is always better than anything I could come up with on my own.  So, we will wait.

Some funny sayings from our Toby this week:

"Mom, I have big muscles just like the "HULK"!"
"Mom, I love you - you are my best girl!"  Melts my heart...
He told the nurses in pre-op waiting, "that he was shaking his bootie!"