A Birthday Story

There once was a little boy who was born into a family with two big brothers, a mommy, and a daddy. When he was born, his parents weren't sure what to expect because he had been diagnosed at 21 weeks gestation with Myelomeningocele (the worst form of Spina Bifida) and Hydrocephalus. At first, it seemed he was more a diagnosis than a baby. His parents were scared as they met with doctors, toured the NICU, and planned for his surgeries he would need.

After his birth he had two major surgeries. One to close the open hole in his back, and one to place a shunt in his brain. Then, his scared parents took him home. 

I love this photo pre-trach. He was such a teeny tiny baby.

After eleven days at home, their lives would be completely turned upside down as their son began to struggle to breathe. He would make loud noises when he breathed and his mother could tell that he had reflux as the projectile vomit flew. On a Monday morning they would take their baby into the emergency department of their local children's hospital not knowing they would spend the next 64 days there. After a few days they heard grim news. Words like, "vocal cord paralysis, apnea, reflux, gastro-jejunal feeding tube, airway issues, and Chiari II surgery" were thrown around. Then, on the fourth day, this precious 6 lb. baby would need the pediatric intensive care unit because his sodium was 108, he was lying limp in his mommy's arms and struggling for every breath. He would need a CPAP mask and oxygen.

For the next several weeks, he would get better for a few days, but then once they took off his c-pap mask, he would turn blue and stop breathing. This would earn him a few more days with the mask only to repeat the process over and over again. He would need warming lights, lasix, oxygen, saline boluses, and then surgery to fix his shunt.

At one point, he was discharged to a regular floor, had his PICC line removed, only to code and end up right back in the PICU.

He would fail tests, and finally one doctor said, "Enough is enough; this baby needs a trach." His parents would be devastated because they knew what this meant. They wouldn't hear his voice or cry for a long time - maybe never again. However, they knew that in order for their baby to live - a trach was his only option. They also learned he has central sleep apnea, which means his brain doesn't tell his body to breathe when he's sleeping, so he would also need a ventilator.

Finally after a few more surgeries to place that trach and a feeding tube, their baby would come home with a ventilator 24/7, a feeding pump 20 hours a day, oxygen and all types of equipment - his little nursery turned into a miniature hospital room. 

Through the years his parents would fight for him to reach every mile stone - through therapy and therapy and more therapy. He didn't always love his therapy!

They would take him to another children's hospital that specialized in airway and digestive disorders to maybe, just maybe he could eat. His mommy would sob the first time she went to Kroger to purchase his first baby food - when he was 16 months old.

When he was 20 months, he pushed his first wheelchair with an 18-pound ventilator on the back.

Then, his parents began to hear his voice. He had a small air leak around his trach, which allowed the boy to push that air over his vocal cords so he could speak. Then around the age of two, he began to say, "mama and baby." 

He got a speech device - a computer so he could push buttons - so it would talk for him. Within a few years, he wouldn't need it.

Over time he also began to eat more and more baby food, then pureed table food, and then dissolvable solids. He had feeding therapy and speech therapy, physical therapy and occupational therapy. There were days his mom was so discouraged she felt she should give up on eating and talking. 

Then, he came to need the feeding pump less and less. He had surgery to stop the reflux. 

He only needed the pump at night. He began to eat real food, and then more real food and then more real food. One day Toby's dreams would come true and his feeding tube would be removed.

His grandpa had taught him to sing and use his big voice around the age of 4. He would sit at the piano while Grandpa played and sang songs like, "Singing I Go", "The B-I-B-L-E" and "Jesus Loves Me." This little boy could only get in a few words - he didn't have enough breath to sing a phrase.

Here's a link to that video (Please watch this - it is amazing to compare this with the video at the end).

When the little boy was five, his shunt would fail and he would have brain surgery to fix his brain so he wouldn't need the shunt anymore. One week later he would have a seizure so severe it would last four to six hours, and he would have to be sedated for his body to stop convulsing. His mommy was afraid he would never sing or speak again. 

She prayed for him to wake up and tell her that he loved her, and she resolved to never take for granted the voice of her sweet boy. A few days later, he would wake up, and though he would have to go through a lot of therapy to even hold his head up and safely eat by mouth again, he did.

Over time, Toby has faced many other challenges, the greatest from ages five to eight has been surgeries on his back to correct scoliosis. He's faced wound vacuums, infections, and extreme amounts of pain from rods coming detached. He's faced fear having to go into the operating room over and over and over. Each time he wakes up with a voice and asks for a drink almost immediately!

Toby began to develop a love for singing and has learned to control his breath to produce the sounds. He began to sing phrases and more and more words, though not always on key because his vocal cords still don't vibrate the way he should...this boy makes a joyful noise unto the Lord! His favorites are praise songs and Toby Mac. It's not unusual to hear him singing at the top of his lungs while raising his hands in praise to God - the God who has healed him from so much through the years. 

His favorite song right now is Undeniable by Toby Mac.

This Christmas he was asked by his children's pastor to sing for the Christmas program - to show how far God had brought him, and what he had done in his life. The little boy with no voice sang a song for Jesus. 

Ephesians 3:20-21

"Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Amen."

When God Asks You to Slow Down

In the last twelve hours, our lives have been turned upside down yet again. Toby is going to need surgery to fix a VEPTR rod that has come off. He's in pain, his back is bulging, his cheeks are flushed; it's hard to see your child in pain. We've been through this before (Photos from December 2012)

This is basically what his back looks like right now. I often chuckle when I open the Time Hop app on my phone this time of year. As I scroll, there are photos and reminders of all the past surgeries. October and November are tough. I cry out to God, "Why does this always have to happen this time of year?" This will be rod surgery number twelve in the past three years. He's needing heavy pain medications to be comfortable and not complain.

I am reminded of something our orthopedic surgeon said to me last year,"With VEPTR, you have to prepare yourself for a tsunami of grief." I know this and yet it sneaks up on me, unaware. Today the surgeon told me, we have at least 8 more years of this until he can stop growing and fuse his spine together. Life has been so stable as of late, I thought maybe we wouldn't have anymore "unplanned" complications. this wasn't in my plans, only two growth surgeries a year. I was wrong.

Now, that we have a preteen in the house there is another aspect to this special needs journey: a young man's questions and opinions about a situation that is also turning his life upside down - upsetting his plans. How do I help him understand that God is faithful even through this? He even asked me what Toby would be like without VEPTR. I can't imagine, he would be a shriveled boy, digestive issues, pneumonia; I can't imagine. The alternative is much worse than what we face now.

What is the lesson to be learned here? My mom thinks maybe God is asking me to slow down. We have been moving 100 miles an hour since spring. Even though I don't realize it, she hears it in my voice - the exhaustion and sometimes the sadness, the pressure of being overwhelmed, of always trying to get it all right. Mom's intuition: I'm thankful for her insight. Maybe I do need to slow down? (So, we did today - we are baking today, school has taken a back burner).

I still don't quite understand why it's this time of year; when we face holidays and the barrage of winter birthdays of four members of our family. The time of year when I want things perfect, presents, parties, celebrations of "God with us". The past several years, I am always playing catch up instead of being ahead of the game. A time of year that I would rather be giving back to others instead of on the receiving end. I worry that our friends will tire of our trials and run as they may be asked to give to us yet again. I hate being needy.

By no means will this be a major surgery for Toby; we've been through much worse. He should be in and out in a day. But, I dread the process, I dread the bucking up for his sake, and the grief and sadness that paralyzes me later. I dread the feelings of uselessness and not wanting to do anything when there are responsibilities to fulfill.

Then, I look back and remember all the times we've been through this. God's story has been woven through time and time again. His love, His faithfulness, His sustaining. I couldn't do this without Him. I am guilty of sounding like a broken record, of the theme of this journey - verses that God gave me long ago in the PICU when Toby held on to life by a thread:

Psalm 40:1-3 "I waited patiently for the LORD; And He inclined to me, and heard my cry. he also brought me up out of a horrible pit, out of the miry clay, and set my feet upon a rock, and established my steps. He has put a new song in my mouth - Praise to our God; Many will see it and fear and will trust in the Lord."

But, maybe Mom is right. I do need to slow down - to enjoy the moment and let the unimportant things go. Mom's usually right. I pray that many will know of God's love and put their trust in Him. I am thankful for those that know our journey, and hopefully see this in us:
"Never once have we ever walked alone, never once has He left us on our own. You are faithful, God, You are faithful." It's a good time for me to slow down and remember His faithfulness ever present each day.

Expectations

Isn't it funny how disappointment is often linked to how we expect a situation to turn out, or how we expect life to turn out. Many misunderstandings, heartache, and pain are over a disappointment in expectations. We expected to have a healthy baby when we had Toby. I may expect my husband to respond in a certain way and he doesn't, then I'm angry or frustrated. Just since May we have experienced the sudden death of my grandmother and step-grandfather, a weird yearly unexplained rash on my hands, arms, neck and face that caused my eye to swell shut, a broken arm, unexplained mold on the back of hanging pictures in the boys' bedroom, and a broken dryer.

When I called my husband to explain the broken dryer, that just so happened to stop working on the day he was flying to Atlanta.

"Don't you think enough bad has happened to us recently, can't we get a break?"

His response:

"No, that's life, Carrie."

And you know what, he's right. One thing God has been teaching me lately is how comfort and ease of life is a false god in my life, and especially in the lives of American Christians. On my very very worst day, it's still better than someone else's best day. So, then I began to wonder should I just expect everything to go wrong and then be surprised if it goes right? Do I need to change my expectations? Instead of expecting life to be easy, comfortable, less chaotic, and organized - do I expect it to be the opposite and maybe I won't be half as surprised or grieved when curve balls are thrown my way. It seems a gloomy way to look at life - glass half empty instead of glass half full.

I DO NOT believe we should live without hope or look at life negatively, but the Bible does instruct us NOT to be surprised when bad things happen.

Peter talked about this,  in I Peter 4:12 "Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you."

Jesus said in John 16:33, "These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I have overcome the world."

In this world you have tribulation, and we will. Don't be surprised when the fiery trial comes, yet so often we are. I have been currently reading through a book called Teaching From Rest: A Homeschooler's Guide to Unshakeable Peace by Sarah McKenzie, and it's message (Biblically based) has been teaching me not only how to home school from a state of rest, but how to life life from a state of rest even in the midst of absolute chaos.  Even if you aren't a home schooling mom, I highly recommend the book (she has a new edition coming out in August) because what she talks about is so applicable to LIFE. In the chapter The Cake Under the Couch, she relates all of those little daily things that happen to us - the broken dryer, the toddler tantrum, the car breaking down, etc. and says, (these were my list - she listed different things)

"Can you hit the pause button on your frustration long enough to realize that people rank infinitely higher than anything else on the list? Have you considered that God may have scooted these people into view for the very purpose of slowing you down? (p.23)

Whatever is getting in the way of your plan for the day,...whatever that intrusion into your grand plan for the day is, it's also an opportunity to enter into rest. (p.24)

and now a quote from C.S.Lewis

The great thing, if one can, is to stop regarding all the unpleasant things as interruptions of one's 'own' or 'real' life. The truth is of course that what one calls the interruptions are precisely one's real life - the life God is sending one day by day; what one calls ones' 'real life' is a phantom of one's own imagination. 

-C.S. Lewis (McKenzie, A Homeschooler's Guide to Unshakeable Peace, p.23-24)

I laughed when I read this because this is ME. I lament the juice spilled on the floor, or the broken dryer (did I mention our dryer is broken - just in case you missed that), the little inconveniences of every day life because they interrupt my plans. They interrupt my comfort. I just want them to be over with so I can get on and live my "real life". Yet, that is life. These interruptions should also be driving us to interact with the people in our lives to take the time to get on eye level with that child and say, "It's okay, let's clean this up together." instead of ranting and raving how their mistake interrupted plans for the day. (I am so guilty of this).

But, what about the BIG things? Death, diagnosis, disease, health issues - those aren't small things. How do we live from rest in the big things? The same was with the small - taking time to trust, rest, pray, and live connected with the One who knows and has experienced life as we know it.

Hebrews 2:17-18

Therefore he had to be made like his brothers in every respect, so that he might become a merciful and faithful high priest in the service of God, to make propitiation for the sins of the people. For because he himself has suffered when tempted, he is able to help those who are being tempted. 

Hebrews 4:15-16

Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession. For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need. 

Our pastor preached on these scriptures last Sunday and pointed out that Jesus is the only God of all the religions of the world - the God of all gods who came to earth to be like His people. He left the glory of heaven to experience life and suffering, ultimately to die a death for sins he did not commit so we could have a relationship with him. He doesn't ask for us to be perfect, to follow a set of rules, but to lay aside our sin and follow Him.

He experienced so many things as a man on earth:

*financial hardship (but the Son of Man has now where to lay his head, Luke 9:58), 

*emotional suffering (Father, if you are willing, remove this cup from me. Nevertheless, not my will, but yours, be done, Luke 22:58), 

*loss of relationship (He was betrayed by Judas)
*physical suffering (beaten, crown of thorns, cat of nine tails, crucified)
*persecution and mocking (And Herod with his solders treated him with contempt and mocked him, Luke 23:11)
*betrayal and denial (by Judas and Peter)
*temptation (Matthew 4)

Yet, through it all, the writer of Hebrews says we do not have a high priest who is unable to sympathize with our weaknesses. He knows suffering. He wept when Lazarus died, even though He knew He would raise him to life again. He experienced hard things and can sympathize with us in our weakness because He isn't the God in heaven so far removed from us, but He is Emmanuel - God With Us.

I want to fall on my knees and worship and cry, "Holy, Holy, Holy."

As a result I can go on and have new expectations, not that life is going to be easy or that life isn't going to be....."life", but that He is with me. He will never leave me. He is faithful. He is merciful. His love is never ending. The more I live connected with Him, the more I bring my petitions before Him, my weaknesses, my failures - the more His Holy Spirit empowers me to face circumstances that are beyond my control and I can have peace in all circumstances, joy in trials, faith in hardships.Whatever we face, with Christ, there is always hope, and I can put all my expectations in Him because He never fails.

Toby's Summer Update

No news is always good news where Toby is concerned. Although, we have had some things going on, it’s been hard to find the time to sit down long enough to let you know how he’s doing. Overall, he’s doing well. We have gone four months without a hospital stay and that is always a success in my book, and I’m truly thankful for the downtime.

He has had a lot of appointments in recent weeks/months. He was fitted for compression socks to help with his circulation because of his legs/feet turning purple. I will say that it has improved. It’s also Murphy’s Law – as soon as we get the socks, his circulation gets better and he doesn’t really need to wear them as often. I think the warmer weather helps too.

Three weeks ago, we picked up a pair of knee splints, which are braces Toby will wear at night to help stretch out his knees so they will straighten. They are pretty tight.

Which leads me to….spinal cord detethering surgery.

The neurosurgeon and I have been doing this dance for about a year of getting to know each other and him getting to know Toby. He was new to NCH last April. He is also very conservative when it comes to surgery, and I’m thankful for that, but it’s very possible Toby need his spinal cord untethered again. It’s been quite a struggle because his left hip is so tight and barely abducts anymore. It’s causing some skin issues, issues with dressing, cleanliness, etc. It’s really tough – really tough. All of this tightness in his legs, knees, and now his left foot – which now turns up and in, considerably – are in my mind pointing to his needing surgery. Last week we went to see the orthopedic surgeon about the hip, and he said there really isn’t much he can do for him either.  The neurosurgeon wanted to see if the knee splints would help improve his knees, etc.

It’s hard to think about him having this surgery – we’ve kind of gotten used to him being so tight and drawn up together, but it’s really starting to prevent him from doing ADL’s or activities of daily living like getting dressed. His legs will draw together and you can barely pry them apart. We still help him a lot with dressing his lower body because it’s so difficult. It would take him 15 minutes to get shorts on.  Even sitting in a chair is difficult because his legs curl up underneath him. I’m amazed when I think back to just about three years ago when he was so loose, he could go from lying on his stomach to sitting, while moving his legs into a splits position. It’s hard to explain, but he just seems too young to have so many difficulties.

June 17^th, Toby got his second set of Botox injections in his hips. I thought for sure that he would need detethering surgery right away, but the Botox has bought us some more time. We saw neurosurgery last Friday and had a long discussion about it. He basically said if he did the surgery, it would be very aggressive. He would find the point where his function is lost on the spine and cut the spine right there. Of course this made me cringe. It seems so permanent and what happens if there’s a new medical development that allows him to walk later in life, but yet we made the choice to sever his spinal cord. His thinking is to minimize having to go in and detether again. The more you do it the more scar tissue you create and the more you have to do it. He said, “It’s crazy that kids like him at eight years old are in here with 30 surgeries.” I agree. He did ask if things got worse after every lengthening surgery. I can’t say that it happens each time, but over the past two years he has gotten progressively worse. The neurosurgeon is going to pow-wow with the orthopedic surgeon, and they will get back with me. We just aren’t sure what to do. A month ago before Botox I was already for the surgery because of the issues we are having. Currently, the Botox has helped a lot, his hips and knee contractures have improved – especially with wearing the knee braces at night.

August 7^th, Toby will be having surgery #30. This time he is getting a new set of VEPTR rods because he’s outgrown this set. It should be pretty routine; he’ll be in a few days. It won’t be quite as invasive as the full insertion he had about 18 months ago because the hooks stay and the rods detach and then are reattached. He does have one hook coming through his bone in his right hip, so we will know in a few weeks if they will have to fix that piece.

I apologize again for the delay in updates. We have been incredibly busy. I will definitely post updates when he has surgery in August or after we hear back from neurosurgery on what’s next. 

It's a Good Friday For Many Reasons

Today is Good Friday. It's an amazing day of remembrance of our deliverance from sin through Jesus' death on the cross. We now await to celebrate His victory over death on Resurrection Sunday. I am always in awe of these verses:

"But He was wounded for our transgressions, He was bruised for our iniquities; The chastisement for our peace was upon Him, and by His stripes we are healed" (Isaiah 53:5)

Because of Him we have redemption and are at peace with God because our sins are forgiven. Praise God!

Good Friday also holds significance to us in regards to Toby. There are certain dates that are etched in my mind. They are memorials to the scars, pain, and victories we have celebrated these past 8 years. There's...

*D-Day or Diagnosis Day (August 31, 2006),
*The day our lives were turned upside down and Toby went into respiratory failure (January 15, 2007)
*The day Toby got his trach (February7, 2007)
*The day we brought a medically fragile baby home with a trach, ventilator, gj-tube, and private duty nursing (March 19, 2007)
*The day of Toby's ETV surgery (March 17, 2012)
*The day of his awful seizure (March 24, 2012)

And then, there's April 5th, 2012 - It was Good Friday. Three years ago on Good Friday (and yes I know today is April 3rd, but it's close enough!) Toby was released from the rehab unit, after being in-patient for almost two weeks and his awful convulsive seizure that lasted four to six hours. I've never been able to get a clear answer on just how long it was. The neurologist reassures me that after 30 minutes they get concerned about major damage to the hippocampus in the brain, and so four to six hours is quite long enough.

We know. We lived it.

We watched it, and grieved through it wondering if it would ever stop, and if Toby would ever wake up to talk to us again, squeeze us, and tell us he loved us.

He did, and I'm so thankful.

Since then, he's had some major ups and downs. He's had 17 surgeries in the 3 years since. Wow! I truly had no idea until I went back to look at my spreadsheet on that one. 17 - Double Wow!

One thing I have learned through this journey is never to assume your current circumstances will be this way always. Things change, sometimes for worse, but often times for better. We've had some really tough medical stuff to deal with, but we've also seen Toby grow and get stronger.

Here are a few updates since February 2015:

1. Toby's had some issues with circulation in his feet. They turn a very dark purple color, especially his right one. His capillary refill (or blood return) is slow, and so we saw Physical Medicine for that in Myelo Clinic a few weeks ago. They are recommending custom made compression socks to help the blood to flow back up out of his legs instead of down to stay there and pool in his feet.

2. We had a pulmonary appointment March 2nd. Toby is doing well, and for the first time ever we don't have to see him for a year unless there's an issue. He will most likely always need his ventilator and trach, and so he is as stable as he can be with both. During this appointment Toby told Dr. K that he wants to be a doctor when he grows up. Dr. K was a fellow when we first met him, and has followed Toby for the last 8 years. Out of all of our doctors, he's probably the one we've seen the longest that hasn't retired or left NCH. He told Toby he wanted to be the first to write his letter of recommendation when he applies to medical school. I teared up!

3. Toby can sit up on the floor by himself with his arms up for 60 seconds. Now, I know that sounds ridiculous to celebrate, but Toby is essentially paralyzed from the waist down. He has some feeling in places, but you just try to sit on a bottom that's numb. We saw his Physical Therapist for the first time in 6 months, and her last goal was for him to be able to hold his arms in the air for 20 seconds. He blew her away with 60 seconds, and did it twice, which leads me to number four...

4. Toby's upper body strength is really amazing. He is often trying to get up on his hands and knees. He scoots around the floor while sitting up by just using his arms, even though his lower body is dead weight. Sometimes, his pants fall down from scooting around so much and we all laugh! Poor kid!

His newest trick is that he can get from his chair to the floor mostly by himself. In fact today he did it without an adult around and fell into Caris' bunk-bed ladder and bumped his nose. It's fine, and he's fine, but we told him to make sure he has a "spotter" around. 

5. We went back for yet another Myelo Clinic appointment to discuss the Botox injections and whether or not they were effective. They have helped loosen his muscles some, so the doctor wants to repeat them about every 3 months. We also have stretches we are doing twice a day. PT also recommended dynamic knee splints to wear on one leg per night and then alternate. These are adjustable by an angle at the knee, so we can continue to stretch his legs out, so they aren't so drawn up underneath him.

6. Bowel program/Bladder Stuff - most of this is going really well. Toby is in underwear consistently during the day. We are still dealing with a few nighttime accidents, and so the colorectal team recommended adding a water soluble fiber like pectin to his diet. We are going to try an apple pectin because I wasn't keen on the chemicals in citrucel and Sure-Jell (yes, they wanted us to use Sure-Jell). The hope is that it will allow for less leakage if his stool has some slight bulk to it. Sorry about the "poop" talk, but that's the story of my life. I await the day my life doesn't revolve around pee/poop talk, but alas, it is my fate.

7. Medications are decreased/g-tube might come out. Toby is really only on one medication consistently for his appetite. He takes a pro-biotic, Vitamin D, and now we'll add the pectin, but we aren't using his feeding tube hardly at all. Just this week, we asked the night nurses to stop using it at night for fluids. He's drinking around 25-40 oz. consistently during the day, and since he's off any major medications through the tube, alas, we are going for the six month goal of no usage, so hopefully we can get it out this fall.

8. Toby's back is doing better. He does have some very prominent rods, and if he's ever sitting on the floor, you can see them through his shirt. It's crazy! He has had some skin issues, but I consistently use frankincense (an essential oil) on those spots, and they have healed. The NP in Orthopedic surgery made fun of me in clinic about them, but they work, so I don't mind.

9. Wheelchair update. We are currently waiting on approval or denial from secondary insurance on Toby's motorized wheelchair. There were some issues with it and it had to be resubmitted. I'm hoping that he will have it soon before summer especially so he can be active and play outside with the other kids, keep up with them, and be in the grass. Pray with me on this!

10. Neurology discharged us! Since, Toby hasn't had a seizure in almost 3 years we no longer have to see neurology. She told me to call her if we ever needed anything, that we wouldn't have to jump through any hoops, etc. to get answers, but we don't have to follow up with her unless we need to. One less doctor. Can I get a woo hoo? :)

Last, but certainly not least, and this is the main reason for my post tonight is a video of Toby's strength. He's been out of commission from sled hockey this winter from his many surgeries, and then our schedule just didn't allow for him to go. I wasn't even sure they were still holding practice. Well, tonight, he went to the last practice and did amazing. I can't get over how strong he is.

Here is a video of hockey last fall:

Here is a video of hockey practice tonight:

Mind you, he hasn't been to practice since last November, but that doesn't seem to stop him. Although the season is over, he will be anxious to play again in the fall. For now, we move on to Miracle League Baseball.

Thank you for the walk down memory lane, and for allowing me to catch you up on all of the medical updates. It's been awhile. We are so thankful for how far Toby has come from three years ago when he could barely hold his head up after that awful seizure. I'm so thankful that God continues to walk with us through this journey. He is ever faithful.

In no way do I try to compare Jesus' death on the cross and resurrection with what we have gone through, but yet as a result of that - He is with me. As a result of that, I can know Him and have a relationship with Him. As a result of that, He hears my cries and is near to me when my heart is broken. As a result of that, we have the hope of heaven - I know Toby will walk and run. He will play and breathe on his own without equipment, and we will spend eternity praising Him for His grace, goodness, and mercy. It is indeed a Good Friday!

Feeling Like Mary

If you haven't heard the song "Born in Me" as sung by Francesca Battistelli, I highly recommend it. This time of year always takes me back to what it may have felt like to have been Mary carrying baby Jesus.  Eight years ago, I was expecting a special baby too, and he was to be born three days after Christmas.  Every year at this time I am a little more emotional than usual, a little more cognizant of the birth of Jesus. I can imagine what it may have felt like to have been Mary when the angel came to tell her that even though she was a virgin, she was with child and it was the Messiah - the one they had been waiting for- --  to save them.

We also received startling news that held much fear and trepidation.

I would like to put a disclaimer in here, and clearly state that I am respectfully making this analogy. In no way do I equate Toby to Jesus.

However, I imagine that Mary must have been feeling some of the very same things that I felt while expecting Toby: fear, anxiety, joy, wonder, questions of why God had chosen her to be the mother. Many times through the story of Jesus' birth you read about angels reassuring Mary, Joseph, Zachariah, and the shepherds to not be afraid - so I know that those involved had fear over the birth of Jesus.  It was a few years ago, actually, around this time of year that I felt like God helped me to connect to what Mary may have experienced.  Expecting Jesus may have been similar to expecting a child with special needs.  There were many things for Mary to fear - stoning because she was found with child before she was married, the census and taxes that took them on a far away journey to Bethlehem right around her time to deliver.  She was facing so many unknowns.  And then there was Jesus, who was/is perfect and sinless. Mary and Joseph were imperfect and sinful, so imagine trying to raise a child, a perfect child, when in reality every time they may have gone to teach or discipline Jesus - the sin wasn't in Him, but them.  You see this in the story of their trip to Jerusalem.  On the way home Jesus is no where to be found.  They go back to the temple and he's teaching the scribes. It's hard to tell from the scriptures exactly, but I can imagine they were frustrated to find that He wasn't with them, and what does He tell them.  "I have to be about My Father's business."  Oops - not His mistake, it was theirs.

Mary also knew the reason for His birth, that He was born to die for her own sins.  I wonder if every day leading up to His birth she had to daily trust God for what He was giving her. I wonder if every day after his birth she had to trust God because each day took her one step closer to His death.  The same God that chose Mary and Joseph to be Jesus' earthly parents, chose Bruce and I to be Toby's parents...that's an awe-inspiring thought, isn't it?  Just think about that.  If you are a parent, God chose your children just for you, just as God chose His plan of redemption from the beginning of time.

At one point in Francesca's song there's a phrase that says, "I am not brave, I'll never be, the only thing my heart can offer is a vacancy." This is also true of each and everyone of us. Pastor Dean (our pastor) often says we are "Undeniably flawed, but unbelievably loved" and it's because of our fallen sinful state that we need Him and our heart/lives to vacant so He can fill us, love us, and redeem us. The only thing I can offer Him is the surrender of my heart and life for Him to use me in any way He sees fit. The same God who entrusted Mary and Joseph to be the Son of God's parents, has also entrusted us with His purposes when we know Him and call Him our Savior.

So, this time of year always holds extra special meaning for me, and I pray because of this post you might find a place for Him in your life too.

The Need for a Shunt

Today's post is about our experiences with the shunt. The shunt was developed by an engineer in the 1950's for his son.  Ironically his name was John W. Holter (Toby's Grandpa's name is John Holt). He and his wife had tried for ten years to conceive, and then their son was born with myelomeningocele and hydrocephalus. The device he invented - the shunt - helped his son live until the age of five, but then he passed away from complications related to his heart.  My information came from this article (they state his condition as "meningomyelocele").  

Hydrocephalus is a condition in which the ventricles in the brain are producing too much cerebral spinal fluid (CSF) As I understand it, and correct me if I'm wrong on this, Spina Bifida friends, but all ventricles produce CSF.  However, as a result of the open hole in the back in utero, the ventricles are programmed to overproduce fluid because it's leaking out through the open hole instead of recirculating though the CSF system.  Once that hole is closed after birth, the ventricles continue to overproduce CSF therefore causing the head to swell.  Not all kids with SB and hydrocephalus require a shunt, but Toby did.  His first shunt was placed when he was 4 days old.

Shunts are very fickle devices.  Some kids keep their first shunts into adulthood, others only last a few days. The device is a catheter (think straw) with little holes in it that is placed surgically into the ventricles of the brain.  It is attached to tubing that goes down the neck and ends into the abdominal cavity.  There the excess CSF is reabsorbed by the body.  There are risks of it clogging, failing, breaking, coming apart at the distal catheter, and also infection.  There are also programmable shunts and shunts that has tubing that ends in the region of the heart.  Toby's is a ventriculoperiteoneal (ends in the abdominal cavity), and his is not programmable.  

This site is where I found this picture of the shunt.  That same site also has a great MRI picture of the brain with normal ventricles and ones that are swollen with fluid.  Here is a link to more information on the shunt.

Toby's first shunt failure occurred when he went back into the hospital with his breathing issues around 2 1/2 weeks. He had his first shunt revision on January 25th, 2007.  He was barely a month old.  It was very obvious that he was in failure; just inconsolable - crying constantly.  I think the fact that he became hyponatremic (sodium drop), and is changes in blood pressure and temperature were also shunt related.

His second and third shunt revision wasn't until November 9th and 10th of 2010.  This was the first step in finding out whether Toby needed his spinal cord detethered.  The doctors typically explore the shunt first.  In Toby's case, he definitely needed this revision.

There have been other times when we've suspected it wasn't working - the mamas in the Spina Bifida community affectionately or unaffectionately call it SMP (Shunt Malfunction Paranoia).  Toby typically doesn't have the "normal" symptoms of shunt malfunction.  The last time he had a shunt malfunction completely turned our lives upside down.  I had been suspecting for awhile that something wasn't right.  He was impatient, ornery, and his nystagmus (eyes jumping) had gotten really bad.  I called our nurse case manager in the SB clinic that week telling her of my suspicions, so she had the doctors order a limited MRI along with his other tests for clinic that Friday.  

Before this, typically, CT scans were used to check shunts.  Unfortunately, this test exposes kids to large amounts of radiation.  I think I've read that one CT scan is the equivalent to 100 chest x-rays of radiation. The neurosurgeon Toby had at birth left to start an SB clinic in Arizona.  We switched to our current neurosurgeon and he prefers to use the limited MRI's to check brain ventricles for swelling. The benefit is the little exposure to radiation.  The downside is they are really loud, and Toby screams the entire time.  It's really hard on him.

After getting all of Toby's tests and waiting forever to see doctors that day in clinic, our nurse came in looking grim.  The MRI didn't look good - it showed swollen ventricles, and neurosurgery wanted us to head to the ER right away.  He had a few more tests, and then the resident dropped the bomb of trying out a new surgery on Toby called an ETV or Endoscopic Third Ventriculostomy.  The link explains this procedure much better than I can.  He was admitted and had surgery on March 17th, stayed a few days for observation and then went home.

That week we were keeping a close eye on him.  With the ETV, a little more CSF stays in the ventricles than with a shunt.  The risk is also that the fenestration they make in between the third and fourth ventricle can close, so we were watching for that too.  The doctors also left the shunt in, and they had discovered it was indeed clogged.  They leave it in because it requires another surgery - another incision in a different part of the head to take the shunt out.  It can also work as a back-up in case the ETV doesn't work, even though it was partially clogged, some of the catheter was still draining fluid.

Then, Saturday morning around 6 a.m. I woke up to our nurse yelling, and Toby's pulse-ox was going off.  I ran into the room only to see our son's eyes rolling and immediately I knew he was having a convulsive seizure.  We checked to make sure he didn't need to be suctioned, and then we called 911.  That ride to the hospital was one of the longest in my life.  I remember arriving, being ushered into critical care.  By this time, Toby had stopped seizing, even though, I can't really remember when the seizure actually stopped because he was just staring off into space.  My first thought was that there was too much pressure in his brain, the ETV was not working, and he needed to immediately go into shunt surgery.  The medics got an IV in, and they drew blood to test for a variety of things.  The biggest thing that came back was his sodium was low - hyponatremia again.  It was 118.  They began to run high concentrations of saline but not too quickly or it could cause seizures also.  He began to seize again, and this time I can't remember what time it stopped.

I don't remember much after that, but here are a few memories:

*His sodium was corrected and he was still seizing....

*Bagging - I remember the RT's and nurses bagging him off the ventilator because his oxygen was dropping, and he was fighting the vent.

*A nurse with a face I don't remember hugging me as I stood watching them work on him, and I could only break down into sobs.
*Bruce showing up in the ER and he and I sitting on the floor watching them wheel him up to the PICU.

*An employee from admitting trying to get my insurance information as we tried to follow Toby up to the ICU - and a great feeling of wanting to smack her - this wasn't the right time.

*Being ushered out of the PICU as the chief resident in neurosurgery prepared to put in an ICP Monitor - basically they put a cathether in through the ventricle to test the levels of pressure.  

They ended up having to do this bedside as the OR was booked with other cases (It was the weekend).

*Sitting in a room waiting, praying, sobbing...

God was definitely with us through this entire process, even though I really questioned His wisdom in allowing this to happen.  I felt like He had moved His hand of protection from Toby - we hadn't had an emergency like this in awhile, and so I wondered why He had decided to allow this.  In the PICU that day, the neurologist on call for the hospital was sent by God.  She was/is so knowledgeable about seizures, and her approach to Toby's care was so family centered.  One of the rotating doctors in the PICU also had just finished up time with neurology, so I felt like they both had a plan.

I remember laying on Toby and crying out to God to stop the seizure as he continued to seize, medication after medication had been thrown his way, and still nothing was working.  He tremored every few minutes, which they said was still convulsive seizing, but his body was just too tired to do it all over.  I remember asking the doctor what would happen if they couldn't get it to stop, what would they do. Her response was anesthesia or some type of heavy sedation.  They finally had to use versed to get it to stop (a sedative).

Then, they put on the EEG leads to see if his brain was still seizing, but his body could no longer respond. The intracranial pressure monitor never did show an increase of pressure in his brain.  It was clamped most of the time (it's the yellow/orange tube coming out of Toby's head in the photo below).  The doctors couldn't really explain why this had happened.  We believe it was a reaction to the ETV surgery and his sodium dropping.  There were only a few cases of kids having seizures after the surgery, but Toby added one more to the medical literature.

The middle photo on the right with his one arm in the air, was the first time we saw him make a voluntary movement.  Bottom left was his first smile.  Middle were the incisions from the ETV, and the other was the intra-cranial pressure monitor.  

By the next evening, he did start to wake up and the EEG showed no seizure activity.  I'm not sure why, but seizures have always been one of my greatest fears.  The doctors haven't ever been able to give me a straight answer on how long he seized - we know it was between 4-6 or maybe even 7 hours straight.  I kept praying that I would hear his voice again, see his smile, and have him look me in the eye. I also realized how greatly I had taken those things for granted.  It reminded me again to be thankful.

Even though, Toby was waking up and was moved out of the PICU. He could barely hold his own head up, so the doctors began to talk of moving to the Rehabilitation unit.  This way he could get consistent therapy and learn to sit up, move, write, and eat again.  We did move to that floor after about a week.

Toby was learning to throw a ball again he could barely hold himself up or his arms over his head; he was so weak.

Toby only spent about 5 days in rehab.  You could tell by the end of the week that he just needed to go home.  In two days it would be Easter, and I couldn't handle one more day being in the hospital.  He was discharged on Good Friday!

I read Psalm 31 over and over during this hospital stay.  The verse below rings out its' truth over and over:

Psalm 31:4-5a "But I trust in you, LORD: I say, "You are my God."  My times are in your hands..."

Just last month we had a follow up appointment with his neurologist.  The same one that was there in the chaos, the same who happened to be on call for the hospital.  We talked about the seizure again, and I asked her to pin down for me how long he actually seized.  It was going to take too long to dig through all of his medical records, even electronically (that's scary), but she reminded me that once someone convulsively seizes for 20 minutes it's too long.  After that they risk damage to their hippocampus in their brain.  The amazing thing, and this is God's healing, is that Toby's MRI right afterwards, and every one since has shown no damage to that area of his brain.  I am reminded that our times are in His hands - our very life and breath. He knows all.  So much good has come out of that situation:

*A reminder to me that I am not in control was one of the biggest, a renewed trust in God's faithfulness.

*Deeper thankfulness for the abilities that Toby does have, instead of focusing on what he cannot do.
*A renewal of our full nursing hours; this sounds crazy, but right before this our insurance tried to cut them and then because of this situation, they couldn't justify it.

*The ability to declare God's healing in Toby's body and brain.
*In many ways I think it prepared us for the road ahead with the multiple surgeries on Toby's back/scoliosis.

*We saw the body of Christ reach out to us through a brand new church we had only been attending for a few short weeks before this situation...and it led us to stay there - a church that has a passion/gift for reaching families of children with special needs. 

Two times in Toby's life his sodium has dropped below normal levels and both were closely related to shunt failure. The condition is called hyponotremia. Just last week a neuro-ophthalmologist told me that at the base of the third ventricle in the brain is the hypothalamus, which controls sodium levels/hormones, etc. It's possible that too much pressure there or a cut as in the case with the ETV messed with his sodium levels and caused them to dip.  It was interesting to learn this bit of information.

Some may ask if we had do make the decision to do the ETV all over again, would we?  I think we would, we made the best decision we could with the information we had at the time.  Even though there are days, I still question whether it's working properly, it has taken away some of the worry whether or not the shunt is working.  This is only what I can think of right now, although I know there may be many more in years to come as God reveals His purpose as He sees fit.  He has a way of bringing back these situations and we can say, "Oh, that's why that happened." To God be the Glory, Great things He has done.