The race is in four days. Tonight I did a 4-mile run, and it's the best I've felt running in several weeks. I think my body is just tired, and our long runs on Saturdays, haven't been the best. I have lowered my expectations this year on my time - past years I've been able to run it under 2 hours, but I'm not expecting that this year - just to finish and still be healthy and whole at the end. A song that a friend recently shared with me by Mandisa has just been added to my iPod running list. It's called Overcomer. I still can't listen to the entire song without getting choked up.
Just a few of the words:
You're an overcomer
Stay in the fight ‘til the final round
You're not going under
‘Cause God is holding you right now
You might be down for a moment
Feeling like it's hopeless
That's when He reminds You
That you're an overcomer
You're an overcomer
Everybody's been down
Hit the bottom, hit the ground
Oh, you're not alone
Just take a breath, don't forget
Hang on to His promises
He wants You to know
The same Man, the Great I am
The one who overcame death
Is living inside of You
So just hold tight, fix your eyes
On the one who holds your life
There's nothing He can't do
He's telling You
What hit me as I listen to this is that we are all "overcomers" or can be through Jesus. We can overcome the greatest obstacles with strength from God. I thought about Toby and how much he has over come. I think of myself as an overcomer - over coming despair, faithlessness, bitterness; I'm a fighter and I want to win this fight against the Spina Bifida that threatens to keep us down! Then, I thought about so many that I know who have lost loved ones to death. Have they overcome? Can we be overcomers in death? Don't miss this....
The answer is yes.
Because Jesus is the Great I am, and He overcame death when He died and rose again - even death can be overcome. It comes when any person puts their personal faith in Jesus - His death, burial, and resurrection - a surrender of our lives to Him and He comes to live inside of us. (see the last verse of Mandia's song). That even when death claims our life, we can still ovecome because to know Jesus is to have eternal life withHim in heaven. There is NOTHING He can't do because He has overcome even sin, hell and death.
"How do you eat an elephant?"
"One bite at a time!"
In many ways that is how we have to approach this journey of life - one step at a time, one day at a time walking in faith. We don't know the end result, we don't know the outcome, but we can walk through it by faith, holding the hand of the one who holds us!
In dealing with Toby's scoliosis or curvature of the spine, we have learned to take things one step at a time. Just when I think there's an end in sight, another curve ball is thrown our way. Scoliosis is very common in kids with Spina Bifida. When there's damage to nerves that also means nerve signals aren't being sent to the muscles, which makes them weak and atrophied. This is also true of the muscles around the spinal cord that keeps it straight.
About every 6 months, Toby meets with a team of doctors in something we call Myelo Clinic, which is short for Myelomeningocele clinic or the Spina Bifida clinic. This is a day where we see all the doctors, nurse practitioners and therapists related to the main conditions Spina Bifida causes. It's typically made up of neurosurgery, orthopedic surgery, urology, physical medicine, and a developmental pediatrician that specializes in kids with SB. We also see physical and occupational therapists, a neuropsychologist, and typically the main guy that does walking braces and another that does wheelchairs/adjustments is also there. It can be a VERY long day to say the least.
In March of 2010, Toby had an x-ray of his back at clinic, and it showed that his spine was beginning to curve. I can't remember exactly what he curve was, but it was slight - less than 20 degrees, I believe. By the fall, it had progressed to 41 degrees, and the doctors began to get concerned. I was concerned too because his little ribs on his right side began to stick out; I noticed it most when he was sitting independently on the floor or in his bed.
One of the main reasons kids' scoliosis can worsen so quickly is because of something called a tethered spinal cord. As soon as neurosurgery heard about Toby's scoliosis, we were scheduling appointments and MRI's to see if this was the case with Toby. Almost all kids with SB have a tethered spinal cord. This is where the lowest part of the cord is tethered or stuck to scar tissue from that initial back closure surgery as a newborn. It can require surgery to untether or release it from the surrounding scar tissue if a patient is having symptoms. Some of the main symptoms are pain, a change in a person's walking ability or gait, scoliosis, and a change in bladder or bowel function. Toby's main symptom was scoliosis. At first, Toby's neurosurgeon wanted to explore the function of Toby's shunt because all of that can be related. November 9th of 2010, Toby had an MRI under anesthesia that did show some issues with his shunt and so he had surgery.
Unfortunately, the catheter in the brain wasn't draining the excess cerebral spinal fluid well enough, and Toby wasn't acting right at all (see photo on right). The doctors ordered a quick MRI to check the ventricles in his brain to see how large they were. The very next day the nurse practitioner broke the news that he needed to go back into surgery to move the catheter.
After the shunt surgery, the doctors wanted to follow up with another MRI that next spring to see how things were going and if he would need his spinal cord released. In my opinion, there seems to be two major common surgeries in kids with Spina Bifida that are the most feared: spinal cord detethering and Chiari II decompression surgery. It's understandable, in both surgery is performed in very sensitive areas - the spine with all of the nerve fibers and the second is taking out skull bone to make room for the brain stem. After another MRI under anesthesia in March of 2011 and much discussion with the neurosurgeon, we decided to wait on the detethering surgery. Hindsight is always 20/20 and looking back I have often asked myself if I should have pushed more to have the surgery done. Did we make the decision to not untether because of fear? Would Toby have needed the rods in his back at such a young age? I honestly think the answer is "yes". We should have done that surgery then. I don't know if it would have stopped the need for rods, but I think it would have slowed down the progression of his scoliosis because his spine would have been free to grow with his body, but instead it was tethered and as he grew it curved. I certainly don't walk around in despair, but I also wish that maybe we wouldn't have feared that surgery so much and taken a different path.
At first, the orthopedic surgeon decided to try back bracing to slow down the scoliosis progression. As you can tell, Toby hated it. It also was the cause of his autonomic issues, where he would turn red on half his body (see last post).
After we figured out this back brace wasn't going to work. Next on the list was a night-time back-bending brace.
This "THING" as I'll call it was constantly causing issues, rubbing and redness. It sort of looks like a medieval torture device. We had to have it adjusted so many times I lost count. However, it did work for awhile.
Then, Toby began to get some pretty severe redness and chafing from the brace even with adjustments, and I knew something wasn't right. Last September at a routine Myelo Clinic appointment the bomb was dropped. Toby's scoliosis was past 50 degrees and it was time for VEPTR surgery. VEPTR stands for Vertical Expandable Prosthetic Titanium Rib. These are two titanium rods that are attached in two pieces if you will - from rib to rib and rib to hip. Every six months an extension or growth surgery has to be done to make them longer so they will grow with the child.
Before the rods could be placed, a spinal cord detethering needed to be done. The thinking behind this is when you straighten the back - if the cord is still attached in the lower part of the back, the scoliosis will worsen instead of getting better - especially with each extension surgery. When Toby had his done, he also had his shunt checked just in case. This was October 23, 2012.
Around three weeks later, on November 12th he had his first VEPTR insertion. Right before this surgery, he got really sick. It was the worst respiratory sickness he had had in a very long time. He was needing oxygen and more time on his ventilator. He had RSV. It was crazy, but they allowed him to go through surgery because he needed to have it so desperately. The anesthesiologist was one of the best NCH has. Toby has had him for several surgeries, and he reassured me that he would be okay -they would take good care of him.
Then, just a few weeks later our world came crashing down. We went to Michigan to visit family for Thanksgiving, and I noticed that there was some bleeding under his dressings from surgery. It didn't look good, but we waited it out through the weekend, and Monday morning headed in to see the orthopedic surgeon. The rods were causing a wound from the inside out and would need to be removed. So, on Nov. 28th he had his 3rd surgery in just over a month, and this time they also had to place a wound vacuum. He was also on three different antibiotics for six weeks because of infection. (WARNING - these photos are not for the squeamish)
The above photo is the progression of the healing of his wound. Now, you can't even really see the scar.
Unfortunately, things weren't over yet. Just a few weeks after this, I noticed Toby had a huge lump on his left shoulder. At first I thought his shoulder had popped out of place, and later realized that his rod had popped off his rib cage. We think the left side just had too much pressure on it because the right lower piece that goes from rib to hip had been removed. On December 11th, he had his fourth surgery in about 6 weeks - this time all the rods were taken out and the plan was to try again the next spring.
Those six months were pretty rough for Toby. His stomach, intestines, lungs, etc. were so compressed from his almost 70 degree curve at this point that nothing was functioning as it should. In early April 2013, Toby was admitted for borderline pneumonia. He wouldn't be able to have rod surgery if his lungs were collapsed. His digestive system also wasn't working properly, and even with nightly enemas, he was so constipated that everything was pushing up on his lungs. Finally, on April 23rd Toby had his VEPTR re-insertion surgery.
It's always amazing to me to see the progression from right after surgery to discharge date and then several weeks later. Then, just recently in late August we learned that the lower rods on his left side were indeed migrating through his hip bone, and he needed another unplanned surgery. On September 6th, he had his 5th related VEPTR surgery in a year (not counting the spinal cord detethering, port surgery in June, and cecostomy in July of 2013).
This is an x-ray photo of what the rods look like on the inside. It's amazing to me how straight his back is, and so far things are doing alright. We head back next week to see what the doctor thinks. Everyone is always asking how things are going, and the fact is the rods can break, pop off, or cause issues at any moment. Just because he is 6 weeks post-op or even 6 months doesn't mean he can't have issues. It's always a game of waiting for the other shoe to drop.
I hope you can see why I posted about THE Overcomer. Toby certainly has overcome so many obstacles in his life, and I know he will face many many more. What I really want to convey through this post today is that I can say with all certainty that God is holding us, just as the song says. I can truthfully attest that He is holding me through every one of these surgeries, recoveries, post-op appointments, and bad news. He has been the rock that I stand on, the light in the darkness, the mercy and grace that I need to face every challenge. He holds my life and my boy in His hands, and I know that His plans for us are better than anything I could come up with on my own and one day He will get the victory over all of this when I see Toby running in heaven.
Then, Toby began to get some pretty severe redness and chafing from the brace even with adjustments, and I knew something wasn't right. Last September at a routine Myelo Clinic appointment the bomb was dropped. Toby's scoliosis was past 50 degrees and it was time for VEPTR surgery. VEPTR stands for Vertical Expandable Prosthetic Titanium Rib. These are two titanium rods that are attached in two pieces if you will - from rib to rib and rib to hip. Every six months an extension or growth surgery has to be done to make them longer so they will grow with the child.
Before the rods could be placed, a spinal cord detethering needed to be done. The thinking behind this is when you straighten the back - if the cord is still attached in the lower part of the back, the scoliosis will worsen instead of getting better - especially with each extension surgery. When Toby had his done, he also had his shunt checked just in case. This was October 23, 2012.
Around three weeks later, on November 12th he had his first VEPTR insertion. Right before this surgery, he got really sick. It was the worst respiratory sickness he had had in a very long time. He was needing oxygen and more time on his ventilator. He had RSV. It was crazy, but they allowed him to go through surgery because he needed to have it so desperately. The anesthesiologist was one of the best NCH has. Toby has had him for several surgeries, and he reassured me that he would be okay -they would take good care of him.
 |
| Before and after - look how straight and tall he is. |
Then, just a few weeks later our world came crashing down. We went to Michigan to visit family for Thanksgiving, and I noticed that there was some bleeding under his dressings from surgery. It didn't look good, but we waited it out through the weekend, and Monday morning headed in to see the orthopedic surgeon. The rods were causing a wound from the inside out and would need to be removed. So, on Nov. 28th he had his 3rd surgery in just over a month, and this time they also had to place a wound vacuum. He was also on three different antibiotics for six weeks because of infection. (WARNING - these photos are not for the squeamish)
The above photo is the progression of the healing of his wound. Now, you can't even really see the scar.
Unfortunately, things weren't over yet. Just a few weeks after this, I noticed Toby had a huge lump on his left shoulder. At first I thought his shoulder had popped out of place, and later realized that his rod had popped off his rib cage. We think the left side just had too much pressure on it because the right lower piece that goes from rib to hip had been removed. On December 11th, he had his fourth surgery in about 6 weeks - this time all the rods were taken out and the plan was to try again the next spring.
Those six months were pretty rough for Toby. His stomach, intestines, lungs, etc. were so compressed from his almost 70 degree curve at this point that nothing was functioning as it should. In early April 2013, Toby was admitted for borderline pneumonia. He wouldn't be able to have rod surgery if his lungs were collapsed. His digestive system also wasn't working properly, and even with nightly enemas, he was so constipated that everything was pushing up on his lungs. Finally, on April 23rd Toby had his VEPTR re-insertion surgery.
It's always amazing to me to see the progression from right after surgery to discharge date and then several weeks later. Then, just recently in late August we learned that the lower rods on his left side were indeed migrating through his hip bone, and he needed another unplanned surgery. On September 6th, he had his 5th related VEPTR surgery in a year (not counting the spinal cord detethering, port surgery in June, and cecostomy in July of 2013).
This is an x-ray photo of what the rods look like on the inside. It's amazing to me how straight his back is, and so far things are doing alright. We head back next week to see what the doctor thinks. Everyone is always asking how things are going, and the fact is the rods can break, pop off, or cause issues at any moment. Just because he is 6 weeks post-op or even 6 months doesn't mean he can't have issues. It's always a game of waiting for the other shoe to drop.
I hope you can see why I posted about THE Overcomer. Toby certainly has overcome so many obstacles in his life, and I know he will face many many more. What I really want to convey through this post today is that I can say with all certainty that God is holding us, just as the song says. I can truthfully attest that He is holding me through every one of these surgeries, recoveries, post-op appointments, and bad news. He has been the rock that I stand on, the light in the darkness, the mercy and grace that I need to face every challenge. He holds my life and my boy in His hands, and I know that His plans for us are better than anything I could come up with on my own and one day He will get the victory over all of this when I see Toby running in heaven.
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