Yesterday was our annual check up at the Spina Bifida clinic. Just another trip downtown to see the doctors and know that he is growing and maturing.
We started with a muscle test. There was cause for concern...
His right foot, the good foot (the one that has not had any problems in the past) was not getting the same results as before. The arch in his foot was hyper extended and his toes were pulling up in a clawing fashion. These are all things we have noticed recently been didn't know it would be a concern. The Orthopedist is more concerned than the Muscle test therapist. He orders xrays of his legs and his back. Panic starts to set in for me.
The xrays came back clear. The Orthopedic Dr. says that if it is just these concerns with the foot that are going on, we can be concerned with that later or even just watch it and not be concerned at all, BUT if there are any other issues that arise with the other doctors than we will have an issue of Spinal Cord Retethering.
A tethered spinal cord is a disorder in which a child's spinal cord is pulled down and stuck, or fixed, to the spinal canal. The spinal cord normally floats free inside the spinal canal.
As a child grows, the spinal cord must be able to move freely inside the spinal canal. If the spinal cord is stuck, it will stretch like a rubber band as a child grows. This can permanently damage the spinal nerves.
So then we proceed to see more doctors, take a break for lunch and then come back for more doctors. When we finally see the Urologist we are excited to explain the Really Great things that have changed with his bladder. He is staying dry all day, (no leaking between caths.,) he is staying dry at night (no need for a pull up anymore,) He is able to know for himself when he needs to pee instead of just doing it because it is time to do it. We have been so proud of these improvements. The Urologist then told us that while these may or may not be good changes, ANY changes at all are cause for concern. We also talked about the string of UTI's he seemed to have from October through Jan. Turns out those are not really infections but could possibly be symptoms of constapation. Apparently if you go to the Pediatrician and tell them we suspect a UTI and then the child gives a sample through a catheter, there will always be bacteria in the sample. Then because there is bacteria the Pediatrician will say, Yep looks like an infection and prescribe antibiotics. The Urologist asked us to next time try no antibiotics and see how long it takes for it to go away on it's own. I pray this doesn't happen again anytime soon, because the biggest symptom is intense pain and it is hard on all of us.
Then the Neurologist came in to tell us what she had discussed with the other doctors and their findings. She wants to order an MIR on his spine and a CMG which is a bladder test. These two test will determine whether or not he has a tethered cord again. If he does have a tethered cord we will go on to talking about surgery. In the meantime we are just waiting with uncertainty.
Our Chameleon was also devistated when he heard the Neurologist say that Football could be a much more dangerous sport for Karston than it would be for any other kid. If he got hit in the spine, he could have serious damage. Regardless of the other news we got during the day, this was the hardest news for him to hear.
Last night as we all hit the pillows, the devistation of the days news hit him hard. I layed on his bed with him and talked him through the process of surgery and recovery. I let him cry and tried to answer all of his questions calmly. I stroked his hair as he fell asleep. As I left the room, I noticed his brother in the next bed, also crying. I put my arms around him and spoke to him until he too was ready for sleep. All the while hearing my little girl in the next room crying in her bed. She was sad that mommy couldn't tuck her into bed because she had to be with the boys. By the time, I got to my Princess' room she had fallen asleep too.
It was a rough night but I know that God has us in his hands and we are right smack in the middle of God's plan.
We started with a muscle test. There was cause for concern...
His right foot, the good foot (the one that has not had any problems in the past) was not getting the same results as before. The arch in his foot was hyper extended and his toes were pulling up in a clawing fashion. These are all things we have noticed recently been didn't know it would be a concern. The Orthopedist is more concerned than the Muscle test therapist. He orders xrays of his legs and his back. Panic starts to set in for me.
The xrays came back clear. The Orthopedic Dr. says that if it is just these concerns with the foot that are going on, we can be concerned with that later or even just watch it and not be concerned at all, BUT if there are any other issues that arise with the other doctors than we will have an issue of Spinal Cord Retethering.
A tethered spinal cord is a disorder in which a child's spinal cord is pulled down and stuck, or fixed, to the spinal canal. The spinal cord normally floats free inside the spinal canal.
As a child grows, the spinal cord must be able to move freely inside the spinal canal. If the spinal cord is stuck, it will stretch like a rubber band as a child grows. This can permanently damage the spinal nerves.
So then we proceed to see more doctors, take a break for lunch and then come back for more doctors. When we finally see the Urologist we are excited to explain the Really Great things that have changed with his bladder. He is staying dry all day, (no leaking between caths.,) he is staying dry at night (no need for a pull up anymore,) He is able to know for himself when he needs to pee instead of just doing it because it is time to do it. We have been so proud of these improvements. The Urologist then told us that while these may or may not be good changes, ANY changes at all are cause for concern. We also talked about the string of UTI's he seemed to have from October through Jan. Turns out those are not really infections but could possibly be symptoms of constapation. Apparently if you go to the Pediatrician and tell them we suspect a UTI and then the child gives a sample through a catheter, there will always be bacteria in the sample. Then because there is bacteria the Pediatrician will say, Yep looks like an infection and prescribe antibiotics. The Urologist asked us to next time try no antibiotics and see how long it takes for it to go away on it's own. I pray this doesn't happen again anytime soon, because the biggest symptom is intense pain and it is hard on all of us.
Then the Neurologist came in to tell us what she had discussed with the other doctors and their findings. She wants to order an MIR on his spine and a CMG which is a bladder test. These two test will determine whether or not he has a tethered cord again. If he does have a tethered cord we will go on to talking about surgery. In the meantime we are just waiting with uncertainty.
Our Chameleon was also devistated when he heard the Neurologist say that Football could be a much more dangerous sport for Karston than it would be for any other kid. If he got hit in the spine, he could have serious damage. Regardless of the other news we got during the day, this was the hardest news for him to hear.
Last night as we all hit the pillows, the devistation of the days news hit him hard. I layed on his bed with him and talked him through the process of surgery and recovery. I let him cry and tried to answer all of his questions calmly. I stroked his hair as he fell asleep. As I left the room, I noticed his brother in the next bed, also crying. I put my arms around him and spoke to him until he too was ready for sleep. All the while hearing my little girl in the next room crying in her bed. She was sad that mommy couldn't tuck her into bed because she had to be with the boys. By the time, I got to my Princess' room she had fallen asleep too.
It was a rough night but I know that God has us in his hands and we are right smack in the middle of God's plan.
1 comment:
I am in tears reading all that Karston (and family) has to go through. Please know if you need anything, we are always here for you. Love and prayers to Karston as he faces what God has in store for him. Remember, God only gives us what he knows we can handle with his help. XOXO The Bako Fammily.
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