Wednesday, May 15, 2013

The verdict is in....

and I am trembling in my boots!
But with God ALL things are possible!
So here goes. I am going to put "out there" the news that I am still having trouble getting my heart and mind wrapped around.
Dr. Sun called with the final diagnosis and treatment plan. And my world came crashing down again. I am not so sure I am enjoying this roller coaster ride, I truly wish the cart would stay ON the tracks! But I trust that the Lord is doing something MAJOR and that is why it is so hard!
So, the diagnosis is:
Large Epidermoid Cyst in the area of his tethered cord
AND multiple other cysts in the spinal cord sack
The doctor counted over 40 cysts ranging in size and severity in the membrane sack that holds Nathaniel's spinal cord. He says that he has seen these cysts occasionally, but never to the degree that Nathaniel has them. He also mentioned that they could be in his brain. We did not do images on that area, so we don't know yet. We will do those images when we go back up for treatment.
This news alone broke my heart.
No wonder my poor little man is in SO MUCH pain.
And I am so frustrated that we have been getting progressively worse and the doctors at UCSF did not catch this.
BUT I am SO THANKFUL that Dr, Bravo agreed to this second opinion, and that God lead us to Dr. Sun. I am still completely at peace with this doctor, his skill and his ability to treat Nathaniel. I know God lead us to Dr. Sun for a reason.
So you think the diagnosis was hard? The treatment plan is even harder to get my mind around!!
Treatment Plan:
*Surgery is necessary, these cysts MUST be dealt with, we can't ignore them.
*Another round of MRIs when we go up to check his brain for cysts.
*There is so much to be done that one surgery won't cover it. It will take multiple days to get it all done. At this time the doctor thinks around 30 hours of surgery. (can you wrap your mind around that?? 30 hours? I can't, and I have been trying for a few days now!)
*The surgery comes with many risks, after all they are working with the nerves in his spinal cord! There is a slim possibility that he will come out of all of this a full time chair user. And there is a great chance of infection in these areas.
*They will have to lift about 6 of his vertebra to get to the cysts.
*They will have to cut further up his back than his scar currently is, he will probably end up with a scar to his should blades. (OUCH, kill this momma's heart! Can't I take the pain for him???)
*Due to his allergic reaction to anesthesia we are looking at all options, including the option to put him in a medically induced coma while the work is done. (another blow to my heart.)
*Recovery time will be intense and long.
*This will all be up in Oakland.
I don't know about you, but this just knocked me to my knees.
And I haven't really got up yet.
 I am overwhelmed.
I am scared.
I hurt for my little boy.
 And I just can't even function right yet.
 I am in a complete daze, begging God for his mercy, strength and peace every second.
And the part that is KILLING me most? We don't have a surgery date yet! So somehow I have to go on living with this hanging over us. Way harder than it sounds! My control freak nature just wants the DATE so I can PLAN. But God will give that to me when he is ready. I must pull up my big girl panties and put one foot in front of the other, even if it feels like I am walking in quick sand!
SO MANY of you have asked how you can help, and to be honest, right now I am overwhelmed!
Overwhelmed by your generosity and caring.
Overwhelmed with what needs done.
Sort of even overwhelmed by just getting out of bed in the morning!
But a dear friend recommended a site where I can put in our needs on a calendar and you guys can sign up. I don't have to coordinate anything and still needs will get met... I like the idea, so I have set it up. Right now it isn't much because I don't know yet. I know it will get fuller as things start moving and I need more help with Audrey and life in general. So I am going to encourage you to go visit it now, sign up to be a member and check it out. Not everyone will be called to help, but if you are there are opportunities there.
The other HUGE thing you can do is join us in prayer! Right now our prayer requests are:
*Peace in the journey! The kids only know that we have found what is wrong with Nathaniel and are going to fix it, none of the other details, but they are still feeling high levels of stress, and mine is over the top and out the window. I am continually begging God for peace every second.
*Wisdom and guidance for the doctors, nurses and medical professionals! I am already covering them in prayer daily and would love any to join me. Nathaniel's main surgeon will be Dr. Sun.
*Protection for Nathaniel's brain. I am praying NO cysts are in there, nor would any make their way in there before treatment.
*And for healing. God is the GREATEST physician out there, He can do miracles, and I am begging him for some!
Thank you for taking this journey with us. I know your prayers, thoughts and help have made it possible to carry on. It takes a village sometimes, and this is one of those times in our journey! We are so blessed by our village near and far.


Teri said...

I'm so sorry, Gretchen to hear this. Tom and I will be praying. No words...