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WAITING ON THE LORD ......
So, last update I think I said I would let you know how things go after surgery.
Well as you know the first surgical delay for the syrinx surgery was shelved because I was a mess and Nick felt like we needed to get home and process everything. Jan 15th would have been the date of that surgery at 7:30am - around 6pm that day our Doctor called to tell me that they believed what they were seeing were radial changes. (Sigh and breathing again) our Neurosurgeon Dr. Boop was in that board meeting and the three neurosurgeons at the meeting said they didn't want to do the syrinx surgery, but instead place a shunt to relieve inflammation.
During the end of that week I sent scans to Boston wanting more opinions and more eyes on Nicky's scans --- well shunt surgery was scheduled for Jan 25 and the Nicky got the flu making surgery impossible that week.
It was again rescheduled for the following Friday Feb 1, 2013. So during all this down time I spoke to doctors over and over again about my son. I searched for comparable stories and researched everything from 3mm shunts to ventricle placement.
All weekend and many many on my knees prayers, I wrote my neurosurgeon and asked questions trying to find peace with this procedure. He called me last night and we spoke for about 45 minutes about all the possibilities and mainly my greatest concern being that we place a shunt which could not fix this situation at all and we would eventually need the syrinx surgery.
My thought process was this, if the inflammation in the spine has been slowly becoming an issue since May and his ventricles slightly enlarged around July - Sept, it seems as though these changes are following the lead of what is restricting flow in his spine.
In his brain he doesn't have enough hydrochelus( edema/ swelling) to warrant placing a shunt (YET). So why would this fix the spine?
I even discussed which ventricle a shunt would be placed in and why. Again it came down to believing that placing plumbing in (a shunt) may resolve these issues and may not do anything at all.
I told my doctor, it's hard for me as his parent to watch him filled with energy exhibiting no behaviors of concern, yet I am flying down there tomorrow for a surgery my heart tells me isn't going to be what he needs right now.
Of course if my Neurosurgeon felt like this was the true fix - he would say so but this situation is not textbook at all. So while we have a plan, he said there is no wrong answer and we can wait until the next scan and then maybe the picture will be clearer as to what is needed. Maybe it will give the radial changes time to calm down.
He told me to think about it over night and call him today. Oddly, being the decision maker this time I just didn't feel comfortable making the choice to cancel surgery and wait or to board a plane tomorrow and just "try" this shunt procedure.
So this is when I have to lean on that instinct that God gives mothers and say ... Lets wait and see what God will do.
So we are keeping our March 11, 2012 7:45am scan. We scheduled an appointment on March 12 at the Neurosurgeons office to really figure out what Nicky will benefit from the most. We are slotted for surgery March 13 for whatever God deems needed.
Right now I am at peace because we aren't rushing to do a surgery we are certain he needs. It's very possible he will need syrinx surgery because after all every issue he now has on scans seems to be following suit from that issue. And he may need the shunt, but at least we aren't jumping into anything without feeling its the right thing for Nicky.
Whatever is needed, God placed on my heart that I needed to talk to our doctor and we are blessed and thankful he is a great doctor that listens well and was willing to consider all my theories and ideas and believed that to give it a little more time might just give us more clarity. It on the flip side may not - but it is our prayer that God didn't create these obstacles to pause us for a moment and put things off for now ....
I got a call from Dr. Nicholas Forman from Childrens of Colorado, he use to work at St Jude and had his entire team evaluate Nicky also. His first words to me were - THIS IS NOT CANCER, THIS IS NOT A SECONDARY CANCER OR GROWTH..... now 4 teams agree on that - he did say he has seen this in proton patients so ... he will be writing our team as well. I have truly been blessed to have the best doctors look at our sons case and lots of calls and foot work for me -but would you expect me to do anything but that for my son?
All week I keep thinking about a phrase my Dad told me when Nicky was in treatment. He said, "watch what God can do...." I've rephrased that comment to .... "Let's see what God can do ...." We will be prayerful hoping for the radial changes to be gone and that whatever decisions that need to be made that we move forward with God and faith that it is the right plan for our Nicky.
I had many people remind me all week that through God ALL things are possible. I had strangers walk up and hug me to say just that!
We have our amazing church of over 2000 members that never fail to lift our boy up - to my Brightmoor Family - thank you so much - to our friends and family and Facebook friends that continue to send support with posts, cards and inspiring gifts to remind us all the time that even when we are too weak to respond that you are all with us, praying showing us that you are always with us. Please know we get all your messages, at times when we really need a mood lifter! Thank you for your unconditional love and support - it means so much to us.
I have five special thank you's the first came in an inspirational children's book written by a friend of Nicks he knew growing up. Thank you for thinking of our son when sending this book to us.
The next came as a complete shock to me when a package arrived with a handwritten card from someone I danced with as a child that has her local church Sunday school make this bear for Nicky. I sat in tears when I saw the pocket of tiny index cards folded with hand written notes from children that were praying for our boy. I read them all ... Some so simple others so precious these are by far one of my most prized gifts because these children wrote to my son and have never met him.
The third was The Healing - I wept listening to the cd as I drove to my friend house that lost her son last summer seeking guidance. Thank you Momma B for this cd / bible on replay mode in my car now.
And Momma Lori - I am reading your BE HEALED ... Thank you so much for the book.
And Lastly Chas, thank you for always lifting me up in your own way, I love my prayer braclet and it was at my door when I felt the most defeated.... Thank you ...
For all the people that are praying - thank you so much we actually can feel them .... we pray God gives us a clear direction in the weeks ahead ... and as it is said in Mark chapter 9 verse 14 on - "BRING THE BOY TO ME, Jesus said....."
Lord we are bringing our boy to you daily, for healing and direction and holding him in the faith of your perfect hands .....
Saying all that, we still must pack for a week regardless of what my heart says to me- that hasn't been fun - it's the reality that we must enter - in March 2011 I posted this quote that has echoed everything we face, a local Mom told me ... "prepare your heart", but NEVER stop fighting and NEVER stop believing ... make NO plans on losing. This is my friend, Julian's Momma, Nettie. Her words are true, yes we must pack for a week, we must enter this knowing a surgery is very possible - but we can also enter this BELIEVING that our crazy, energy filled boy is going to show them what God can do and they better show me proof that he needs surgery! I remember our surgeon saying we don't treat the scan, we treat the patient - well let me tell you this patient of mine is doing great! Please pray we stay strong, pray that the doctors see no cancer, no radial changes and nothing that should not be there and send us home so we can move. We pray remembering this is Gods plan, we also know we have the right to pray and lay our petitions at our Fathers feet. So if it is His will that we stay or our boy needs anything done that God is always with us, always making our path straight when we can't see that path. I wrote in my last post about a devotional app called, Jesus Calling by Sarah Young - I don't read forward but I did noticed that Monday, March 11, 2013 the title is "Walk by Faith, not by Sight" - that quote has been on our site and with us since the PICU - it's also on a ring my Dana sent me I wear all the time. Perfect timing for that entry!
