To say the last few weeks have been a blur would be an understatement. My last post was about answered prayers, and man alive, have I had a few lessons in that recently! A week ago this past Thursday, Bob went in for his biweekly physical therapy, and I went to Bible Study. We were still waiting to hear back from the neurosurgeon's office. He was struggling with overall strength, and was having a particularly rough day.
We had plans with a group of friends scheduled for that night that both of us were really looking forward to. I stopped to have lunch and go to the grocery store to prepare for our dinner, and while I was there, Bob called to let me know that his physical therapist said his decline from Tuesday to that day was so significant that she felt it warranted an emergency, and that he needed to see the surgeon immediately. I contacted our family doctor, and after they made calls to the surgeon's office, it was determined that he needed to be taken to the emergency room at KU Medical Center, and that would result in an evaluation with the neurosurgeon.
I notified our friends that we would be unable to attend, hopped in the car, and drove to the rehab center to pick up my man. My mom was with me, so she took the Princess back to the house, and got her down for a nap. Another friend agreed to pick up the boy from Kindergarten, so all I had to worry about was my guy.
We had a 10 hour wait on a bed in the ER hallway. An MRI, CT scan, ultrasound and really good drugs later, and he was admitted and told that he would be seen by the neurosurgeon the following morning. There was another MRI, this time of the thoracic spine, x-rays, and a bunch of conversations with multiple doctors/nurses/etc. Morning turned into evening, and the surgeon arrived to tell us that Bob was not a surgical case. The syrinx that we thought was causing the problem was too small to surgically drain, and while the bone spur may eventually need surgery, it was actually not impinging on the spinal cord, and not causing any issues.
I wish I could tell you that this conversation was met with gratitude and a decent attitude by this gal, but it was not. I was running on no sleep and felt like we were suddenly back at square one. Technically, that was true. Since they had already admitted him, they were going to set him up for aggressive physical and occupational therapy, meetings with a neurologist, and some additional testing. They did a third MRI, this time on the sacral spine. They determined there were zero cord problems. No explanations of how he had declined. It was certainly atypical. No reasons for why he had suddenly lost so much muscle mass and overall weight, no answers for anything. My frustration bubbled over into anger.
It was eventually determined that if the insurance approved it, they would like to transfer him to the KU Spine Center for inpatient rehab. Prayer warriors went to the throne on our behalf and prayed that the insurance would approve. It would be unprecedented if they did, because there was not a new incident that explained the decline. Because God is good, and is sovereign, and knows way better than this girl... he was approved, and will likely have two weeks of intensive therapy. We discovered later that an additional spinal surgery would have not been a good situation for him. The doctors still can't answer our questions about what caused it, but the therapist has identified that the neurons are all firing, and the problem is simply muscle weakness. We can build on that.
He is attacking therapy like the bulldog he is, and looks and sounds so much stronger already. They are working with him on posture and balance, which is helping in all other areas.
Prayers aren't always answered in the way we think they should be. I went into the ER that day thinking that surgery was our answer. God is our answer.
Meanwhile, dear sweet people at our church continue to be the hands and feet of Jesus to us. They have prayed over us, and loved on us, and volunteered all manner of things, proving that despite the fact that everyone has their own stuff... these people are the real deal.
We got to pray over and watch as a family (a really young family at that) had their faithfulness put to the test, and a baby that was supposed to live for hours, maybe minutes, just turned a month old. The doctors can't answer any questions about her either, because she is a medical mystery. In other words, she is answered prayer. Miracles. They are all over, my friends. You just have to look. She had a surgery today, one that they didn't think they would do, and not only did she survive it, her smiling face is plastered all over my Facebook page as I type this, which gives me unbelievable joy.
If you get discouraged, try to remember (and I'm saying this to myself more than anyone) that you don't always see the big picture. Only One does. One who fights for you. One who goes with you, who will not leave you, or forsake you. One who hems you in behind and before, and lays his hands upon you.
Monday, March 23, 2015
Monday, March 9, 2015
Anxieties & Answered Prayers
For the past few months, my man has been struggling with a myriad of issues surrounding his spinal cord injury. With two years having passed, we had expected his recovery to be much farther along than it was. More than that, he was deteriorating at a level that was both frightening, and just so stinking odd.
Last summer, he was rockin' and rollin'. His gait was barely altered, and our biggest concerns were about his hand strength and wrist flexion. He had moved over to a new medication to prevent blood clots. They took him off Coumadin, and moved him over to Xarelto. The plan was that we wouldn't have to have blood checks every week, and still rest easy that there weren't any new DVTs.
A few months later, he started to rapidly lose weight. His walking worsened, his knees began to bow inward, and he had difficulty lifting his feet. His balance, which was already awkward, became more difficult. He began to have quite a few falls. I would be in one section of the house, and suddenly hear an earth-quaking thud. Due to his initial injury, he was never able to get his hands up to help break his fall, so it was literally like a tree going down in the woods.
He lost all his muscle mass, along with a fair amount of body fat (which by the way, I found and promptly reallocated to my back-side) and this increased his pain level. Now bones were protruding. This made sitting or lying down for any duration excruciating for him, as it instigated nerve pain. His bowels and bladder regressed. His joints locked up, and his energy levels waned. It was scary, and it was suddenly visible to others outside of our immediate household.
We eventually agreed that the risk of potential blood clots was much less than the risk of a brain bleed after a simple fall. We took him off Xarelto. He had some instant improvements with how he felt overall, but no strong improvements in the walking or pain levels.
Last month, he had a fall that pretty shocking. He broke his nose, and had a slight non-displacing fracture of the C7 vertebrae. We finally found a physiatrist that didn't shrug his shoulders and say "I dunno why that is happening." Our family doctor (who is AMAZING) diligently went to work on pain management, actually found the new physiatrist, and coordinated care with him to determine our next steps.
The physiatrist mentioned that there was a slight possibility that he may have a syrinx, which is basically a cyst, or bubble in the spinal fluid. He wasn't presenting with typical symptoms, so we were unsure.
A week ago Saturday, he had an MRI to see if that was present. We have been not-so-patiently waiting for those results. His doctor got in touch with him late last night, and we scheduled an appointment to discuss the results.
Today, we learned that he does indeed have a syrinx, 6 mm, in the C3-C4 area. He also has a very large bone spur in the C7 area, that is impinging on the spinal cord. According to the results, it is contributing to "severe right neural foraminal stenosis and moderate right paracentral canal stenosis." Easy peasy, lemon squeezey, right?
Our family doctor (did I mention she is amazing?) is coordinating with the neurosurgeon, and the physiatrist, so that we can get in quickly for a consult and then schedule surgery. While it is nerve-wracking to have him go in for another spinal surgery, it is also SO AWESOME that for the first time in I can't remember how long, we have answers.
Here's the cool part... we have had many people specifically praying that this MRI would give us answers, and that the results would require a surgery or a treatment that would fix what he has been experiencing. Last night, the two of us prayed together, and our specific prayer was that there would be answers. I can't tell you how often there IS NO ANSWER where the spinal cord is concerned. Answered prayer. I love to reflect on specific answered prayers.
Now, of course, I'm giddy like a school girl, because I feel like there's a solution around the corner, and my man is one step closer to full recovery. Then again, I'm not the one getting ready to once again go under the knife. AND there's some documentation to suggest that the removal of the syrinx can stop the progression of the deterioration, but not reverse it. Let me be clear. Our God is bigger than that. Bob wasn't supposed to be able to walk again at all. There was a chance he would always rely on bowel care and catheters, and medicines that I can't even count. He's walking. He's managing (although right now with a high degree of difficulty) his own care, and driving, and a ton of other stuff. If our God wants him to be fully recovered, if it brings Him glory, then he will be fully recovered. I have prayed since February 2, 2013 that he would be 100% restored. Doctors have said that's impossible. They also said that he wouldn't walk. They also said that he would always have to do this or that.... that he would NEVER do some things that he is clearly doing, even in a weakened state. While I will trust our doctors, and follow advice, I will RELY on the only One who has all the answers.
Specifically pray for strength and peace for my man. He is the one that has to endure the surgery, and go through all the aftermath of healing up... I just have to watch. I believe that this is going to be amazing. I believe that he's going to come out with crazy miraculous results, just like his original accident. I believe it with every fiber of my being, but I am also going to say that even if he doesn't, our God is bigger than this whole mess, and we will stand firm.
So there you have it. Prayers are always appreciated. I will update as we have new info. Love you all.
Last summer, he was rockin' and rollin'. His gait was barely altered, and our biggest concerns were about his hand strength and wrist flexion. He had moved over to a new medication to prevent blood clots. They took him off Coumadin, and moved him over to Xarelto. The plan was that we wouldn't have to have blood checks every week, and still rest easy that there weren't any new DVTs.
A few months later, he started to rapidly lose weight. His walking worsened, his knees began to bow inward, and he had difficulty lifting his feet. His balance, which was already awkward, became more difficult. He began to have quite a few falls. I would be in one section of the house, and suddenly hear an earth-quaking thud. Due to his initial injury, he was never able to get his hands up to help break his fall, so it was literally like a tree going down in the woods.
He lost all his muscle mass, along with a fair amount of body fat (which by the way, I found and promptly reallocated to my back-side) and this increased his pain level. Now bones were protruding. This made sitting or lying down for any duration excruciating for him, as it instigated nerve pain. His bowels and bladder regressed. His joints locked up, and his energy levels waned. It was scary, and it was suddenly visible to others outside of our immediate household.
We eventually agreed that the risk of potential blood clots was much less than the risk of a brain bleed after a simple fall. We took him off Xarelto. He had some instant improvements with how he felt overall, but no strong improvements in the walking or pain levels.
Last month, he had a fall that pretty shocking. He broke his nose, and had a slight non-displacing fracture of the C7 vertebrae. We finally found a physiatrist that didn't shrug his shoulders and say "I dunno why that is happening." Our family doctor (who is AMAZING) diligently went to work on pain management, actually found the new physiatrist, and coordinated care with him to determine our next steps.
The physiatrist mentioned that there was a slight possibility that he may have a syrinx, which is basically a cyst, or bubble in the spinal fluid. He wasn't presenting with typical symptoms, so we were unsure.
A week ago Saturday, he had an MRI to see if that was present. We have been not-so-patiently waiting for those results. His doctor got in touch with him late last night, and we scheduled an appointment to discuss the results.
Today, we learned that he does indeed have a syrinx, 6 mm, in the C3-C4 area. He also has a very large bone spur in the C7 area, that is impinging on the spinal cord. According to the results, it is contributing to "severe right neural foraminal stenosis and moderate right paracentral canal stenosis." Easy peasy, lemon squeezey, right?
Our family doctor (did I mention she is amazing?) is coordinating with the neurosurgeon, and the physiatrist, so that we can get in quickly for a consult and then schedule surgery. While it is nerve-wracking to have him go in for another spinal surgery, it is also SO AWESOME that for the first time in I can't remember how long, we have answers.
Here's the cool part... we have had many people specifically praying that this MRI would give us answers, and that the results would require a surgery or a treatment that would fix what he has been experiencing. Last night, the two of us prayed together, and our specific prayer was that there would be answers. I can't tell you how often there IS NO ANSWER where the spinal cord is concerned. Answered prayer. I love to reflect on specific answered prayers.
Now, of course, I'm giddy like a school girl, because I feel like there's a solution around the corner, and my man is one step closer to full recovery. Then again, I'm not the one getting ready to once again go under the knife. AND there's some documentation to suggest that the removal of the syrinx can stop the progression of the deterioration, but not reverse it. Let me be clear. Our God is bigger than that. Bob wasn't supposed to be able to walk again at all. There was a chance he would always rely on bowel care and catheters, and medicines that I can't even count. He's walking. He's managing (although right now with a high degree of difficulty) his own care, and driving, and a ton of other stuff. If our God wants him to be fully recovered, if it brings Him glory, then he will be fully recovered. I have prayed since February 2, 2013 that he would be 100% restored. Doctors have said that's impossible. They also said that he wouldn't walk. They also said that he would always have to do this or that.... that he would NEVER do some things that he is clearly doing, even in a weakened state. While I will trust our doctors, and follow advice, I will RELY on the only One who has all the answers.
Specifically pray for strength and peace for my man. He is the one that has to endure the surgery, and go through all the aftermath of healing up... I just have to watch. I believe that this is going to be amazing. I believe that he's going to come out with crazy miraculous results, just like his original accident. I believe it with every fiber of my being, but I am also going to say that even if he doesn't, our God is bigger than this whole mess, and we will stand firm.
So there you have it. Prayers are always appreciated. I will update as we have new info. Love you all.
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