February 8, 2021 -- A Broken Back

Hello dear ones!  It has been way too long since we have shared an update on our sweet Hope.  I keep thinking, "Oh, this would be great to share on Hope's blog!"  And then the time slips by and I have missed the opportunity.  Please forgive me for that!  Especially in light of how amazingly faithful, compassionate, and loving you are in your heart for Hope and in keeping updated on what is going on in her life as to how you can continue to both pray for her and praise God with her!  Well, I'm sitting down and not missing the opportunity to share this update with you, because it is a big prayer request for our sweet girlie . . . 

Hope has chronic pain.  For the last few years, the primary areas have been her ribs and her neck.  They are not sure what causes her rib pain, but she has learned to cope with it, and it does not hugely affect her overall function, other than avoiding too much time sitting up in her wheelchair.

The neck pain is more concerning and affects her function on a daily basis.  Hope has a pretty significant kyphosis in her neck that developed after her full spinal and pelvic fusion surgery.  The kyphosis means that her neck is not straight; instead, it juts forward right at the place where her spinal fusion begins moving downward.  This is also the place at the top of the two titanium metal rods that run alongside each side of her fused spine from neck to pelvis.  

Hope turned 18 years old this past September and has been slowly being transferred into the world of adult medicine, including various new doctors.  One of these changes is a new orthopedic surgeon to continue to follow her.  We met her new surgeon last January 2020.  Hope has really liked him and he was thorough in his assessment, as well as very helpful in explaining the concerning situation with her kyphosis.  Hope has neck pain every day.  She also has some difficulty with swallowing when sitting up because of how far her neck juts forward.  However, she is a trooper and uses position changes to manage the pain and swallowing issues, and has been able to avoid surgery to this point.

The surgeon is concerned that the vertebrae in her neck are putting pressure on her spinal cord and has us on high alert for any progressing symptoms that would indicate the need for immediate surgery to extend the fusion of her vertebrae to include the area of kyphosis in her lower neck.  With how much Hope's mobility is already limited by the extensive fusion in her spine and pelvis, Hope is trying to put off this surgery as long as she possibly can.  It will make it even harder for her to do things like lean forward to spit into the sink when brushing her teeth, not to mention, it is a very painful surgery and recovery.  The surgery is also complicated when having to work around already fused bones and hardware, as well as when moving into the neck area.  So, we wait . . . and trust the Lord, who is always worthy of our trust because He is faithful!

So, when our girlie says she is having bad pain, we listen!  She is very acquainted with pain and a tough cookie, but new pain can be quite overwhelming for her.  About a month ago, she started complaining of sharp pain and muscle spasms in her back that left her in tears.  We tried muscle relaxants with no relief, and after a week of it not getting any better, I thought I better start looking into help.  I wasn't sure where to start with her doctors, so decided to call two of her new adult doctors, the orthopedic surgeon and her rehab brain injury doctor.  We couldn't get an appointment with the surgeon until a month later, but the rehab doctor was able to squeeze in a phone appointment a couple days later. 

The rehab doctor did an amazing job of asking questions over the phone to try to assess Hope's new pain and what it could be.  Hope asked if maybe one of the titanium rods in her back could have broke.  He felt it was most likely a muscle issue, but thought it would be a good idea to have some X-rays taken just to be sure that there was no failure of the fusion hardware in Hope's back.  He gave us a few things to try in the meantime . . . continue with muscle relaxants and apply heat.  He offered Hope stronger pain medication, to which Hope adamantly refused . . . did I mention that she is a tough cookie?!?  Instead, we used essential oils which did seem to help a bit with the muscle spasms, but the sharp pain with movement continued to be quite severe.

About 10 days later, we had a follow up zoom appointment (all these new ways of doing life nowadays, eh!) with the rehab doctor who had very interesting news.  An X-ray revealed that there was indeed a broken rod in her back, exactly in the area of her sharp pain, the right side of her lower back.  Hope was almost pleased with the news!  Her emphatic response was, "I KNEW IT!"  I think it felt good to have an answer to the cause of her new pain (unlike the rib pain) and that she had nailed it in her suspicions while we all were focused on a muscle issue.

Here is a picture of the broken rod in her back.  This picture was taken with Trevor holding Hope's hands above her head to try to straighten her out as much as possible, so it may not represent her relaxed sitting position.  The arrows point to the broken area. . .

 

Now, her mom and dad were not quite so pleased with the news.  Our hearts sank at the thought of surgery, but even more that this has happened only 6 1/2 years after the fusion surgery.  Hope is young and if this continues, how will her body handle multiple repair surgeries?  We're also concerned that the other rod is in greater danger of also breaking.  And of course, the big question . . . why?  Why did a titanium rod break in her back 6 1/2 years into the fusion with no notable fall or injury to have caused it?

Thankfully, we already had called and made the appointment with the orthopedic surgeon a couple weeks earlier!  Isn't it precious and so very encouraging to see how God goes before us!  That appointment with the surgeon is this coming Friday, February 12th.  We are eager to speak with him and hear his thoughts on why this possibly happened, if it will continue to be a lifelong problem for her, and of course, what needs to be done about it and how soon.  We have been trying to help Hope manage pain and prevent any further damage by limiting Hope's movement, her time in the wheelchair, and being in the vehicle driving as bumps are very painful.

We would humbly ask for the comfort and power of prayer on behalf of Hope's newest health issue.  We have been so blessed over the years of her journey to see God move mightily through the prayers of His people, and we cannot thank you enough for your faithful compassion to pray for Hope, for her doctors, and most of all, for God's glory to be on display in her life so that more people might come to know Him.

I'll end with a little story . . . 

The first week the back pain and spasms began, Hope was pretty overwhelmed with the pain.  After a Saturday night of Hope being awakened over and over by repeated series of back spasms, I stayed home from attending our church service that morning with Hope.  We had listened to the service online at home, but missed the first few worship songs as I was trying to get Hope settled into a position where she wasn't in so much pain and could focus on listening to the service.  I felt frustrated and sad that we weren't able to go to church and be with our beloved body of Christ there, but mostly frustrated and sad that I couldn't make the pain go away for my suffering girl.  After the service, I started the online service over so we could catch the worship songs that we had missed at the beginning.  The final worship song was "It is Well With My Soul."  My hurting heart became overwhelmed as I watched our sweet Hope sing . . . with all of her might and sincere heartfelt passion . . . these words . . .

When peace like a river attendeth my way
When sorrows like sea billows roll
Whatever my lot, Thous hast taught me to say
It is well, it is well with my soul

Though Satan should buffet, though trials should come
Let this blest assurance control
That Christ has regarded my helpless estate
And has shed His own blood for my soul

It is well (it is well)
With my soul (with my soul)
It is well, it is well with my soul.

Hymn by Horatio G. Spafford

I was wrecked!  In the best kind of way . . . where tears flow freely as everything comes into clear view and peace floods your heart.  Hope can sing those words sincerely and passionately with all her might because she admits that she's a sinner, but has repented of her sin, and put her trust in what Jesus accomplished on the cross for her.  Jesus came to earth, lived a perfect life, then died in payment for sin and rose again in victory over sin, so that anyone who believes in Him can be clothed in His righteousness and have eternal life as a child of God.

It is well with Hope's soul, and I couldn't hope for anything else more comforting and wonderful than this!

It is well with Hope's soul, and that is everything!

Later that evening at our Zoom small group, we studied and discussed the passage Romans 5:1-11.  The whole passage was so affirming and encouraging, but the last verse resonated with that precious moment with the Lord earlier that morning as I watched Hope sing . . . 

Romans 5:11 - More than that, we also rejoice in God through our Lord Jesus Christ, through whom we have now received reconciliation.

Again, my heart was overwhelmed with gratitude to the Lord!  Hope has been reconciled to God through her belief and trust in Jesus Christ, and it is well with her soul!  Nothing in this broken sinful world with all its failings, disease, and devastating circumstances of suffering can, in the slightest, dampen the joy of that message!  Nothing!!!

Hope trusts God completely, and in this circumstance, that has not changed.  Could there be anything more precious than seeing your child trust unwaveringly in our faithful God?!?  It challenges me to leave my "mama's heart" worries at the feet of Jesus and trust Him too . . . even when watching her suffer and face uncertainty, even when seeing her face grimace in pain every time she needs to stand, even when facing a "broken back" surgery again . . . 

Thank you for praying, dear ones!  You are so very loved!!!