Friday, May 3, 2013

Our new journey

Wow... my blog is still here! Can you believe it? Poor lonely blog! But I thought this might be a good way to write out what is on my heart right now and share with the most people. So I am jumping back into blogging for this journey...
We are embarking on a new leg of the journey of Spina Bifida.
A little background. Nathaniel is now almost 13, has Spina Bifida and is an energetic little guy! For the past year Nathaniel has been slowly loosing function, and getting weaker and weaker. In the past 8 weeks Nathaniel has been experiencing EXTREME pain. Like wake you up from a deep sleep pain. Like don't want to get out of bed pain. Like change your life kind of pain. It has been heartbreaking to watch my little guy suffer so much!
Like any good mom, I have sought answers to WHY he is in so much pain. We went to the local ER, there was no obvious new injury. We went to our fabulous pediatrician, he agreed something was up and ordered an MRI. We took the MRI and went to our physiatrist and neurosurgeon in SF, they said there was nothing to explain the big change, or even the gradual difference. They made a few recommendations that I thought were a bit off of the wall. We came back home and told above mention pediatrician what happened, he thought I was telling him a joke. Lots of appointments, lots of answers, none of them helpful. Sigh. Stale mate, right?
Thankfully not! Our pediatrician helped us get a referral for a second opinion!! I researched and researched neurosurgeons, and especially neurosurgeons with lots of experience with Spina Bifida (SB) and Tethered Chord (TC) I asked LOTS of SB mommas in California if they LOVED their neurosurgeon and why or why not. From all of this I made a short list of doctors I had interest in, and took it to our pediatrician. He picked the one he liked best from the list and we started our new journey.
Yesterday Nathaniel and I, with the company of Grammie Sharon, headed up to Oakland to see the new doctor and get a fresh set of eyes to look at everything. After 480 miles, 12.5 hours and a few intense hours with Dr. Sun we are back home and ready to share where this journey is heading now.
Dr. Sun looked at the most current MRI, the 2012 MRI and the 2007 MRI (there were no images done between 2007 and 2012 on Nat). Right off the bat he saw the tethered cord that we knew was there, but have repeatedly been told wasn't the issue. Dr. Sun felt that Nathaniel exhibited enough symptoms that all the pain could well have been the tethered chord alone. But he went on to say that he also saw something else that he thinks is working WITH the tethered chord to make Nathaniel's life pretty dang miserable right now. Present in all three MRIs is a growth that Dr. Sun feels is a epidermoid cyst. In the 2007 it is a speck. In the 2012 scan it is present just on the edge of the film, like the bottom of where they were scanning. And in the recent film it is right at the edge again, but significantly bigger than it was a year ago. The placement of the cyst in the middle of his spinal cord, and has caused the cord to split and go on either side of the cyst, also it is right in the area where Nathaniel is most tethered. Dr. Sun feels confident that all of this is what is causing Nathaniel's pain right now and that it must be surgically corrected.
At this point, the current game plan is to go back to Northern California on Tuesday for 2 more tests that need to be done. One is the urodynamics test that we already had scheduled and the other is another MRI that will focus more all around this cyst area and hopefully show us all angles of it (we currently only can see the top portion of the cyst in the films because they only went as low as lumber and the cyst in the lumbar/sacral area.
Once both tests are completed and we have a completely clear picture, then we will be doing surgery. Those of you who journey SB with us know about tethered cord releases, but many of our other friends and family don't so I am going to do a quick overview. Dr. Sun laid out all of the risks, and while they are pretty heavy duty, I have complete peace that this is what Nathaniel needs to get back to living a pain free life. Those that don't know about tethered cord releases, you can either google it, or just pray for the best. They are risky and they are extreme but I am focusing on God's perfect will and perfect healing! I won't be focusing on all of the what ifs. Dr. Sun feels that the surgery should last 10-12 hours, and it will be his only case the day he does it. That will be interesting for this momma to sit through! The recovery is one of the hardest parts from what I understand, and we will be doing most of it in Oakland. I have been told the first 48 hours out are the most critical, the first week he will not be allowed on his back, and the whole recovery should be 6-8 weeks total.
At this point Nathaniel is very excited that we now know what is causing his pain and he is ready to get it fixed. I have not, nor will I be telling him the WHOLE scope of what this is. I am having a hard enough time wrapping my brain around it and I had a gut feel at least half of it was coming! Nathaniel just needs to focus on getting better, not obsess on each step of the journey. I pray you understand where I am coming from on this and respect my choices but not asking hard questions or discussing much in front of Nathaniel. Nathaniel's job on this journey will be to trust in the Lord, his doctors and his family and just get better.
Many I have spoken to today have shed tears, and my heart feels the same way. While I have complete peace, and utter faith in the Lord, this is going to be a tough journey on our family. That said, we will endure! I have given and will continue to give to the Lord all of this, and especially my dear, darling son. I trust that He will take us down His perfect path for this journey.
Your prayers and love during this will be paramount to our well being during this new journey. I especially am so thankful for each and every person the Lord has put in our life. I am surrounded with wonderful, loving, caring people and that make everything more doable! From the bottom of my heart, THANK YOU, the Lord uses you to help give me the strength to do what needs done.
In closing I will leave you with my newest mantra for life, hope it touches someone!
BE the unique person God called you to be so you can DO the giftings and passions He gave you and then you will HAVE the peace and grace that only comes from him!


Tracy Jensen said...

Hang in there friend. <3 I'm sooooo glad you got a second opinion. Praying for you

{april kennedy} said...

I would completely and whole heartedly trust Dr. Sun with my child. He worked miracles on our Little Miss. 8 hour surgery with all the risks and no new nerve damage.

On a side note....the staff called me every hour or so to update me during that 8 hour surgery and the nurses encouraged me to go to Bay Street Shopping Center and get a pedicure. Sounds crazy...but I did it. It helped keep my mind off the crazy what if's and the hourly phone updates where perfect. I'll come get a pedicure with you if you want. or just hang out. let me know as soon as you have your surgery date and hopefully it won't be a court date for us or something that will keep me from being there with you for awhile.

Cindy said...

Oh, big hugs to you Gretchen. I know how hard this is. Evan has had two tethered cord releases. It's not fun. But, you have to do what you have to do. These long surgeries can be scary, but I promise it is worth it in the end, to see the improvement. It might take time, be patient. (Easier said than done). I pray the Lord's peace upon you and Nathaniel. Can you imagine how people can get through things like this without knowing the Lord?? Anyway, call me if you want to talk. Maybe we can get together next week. Or better yet, we will see you at the concert tomorrow.