Kate, my very best friend in the world, has a 2.5 year old son named Joshua who has Spina Bifida, a Chiari malformation, he’s fed through a g-tube, and he has a connective tissue disorder that causes him to produce excess scar tissue.  He is having surgery tomorrow morning at 10:30 EST to de-tether his spinal cord.  This baby lives with chronic, crippling back pain and headaches.  The only way to get him out of pain is to detether his cord, but he has scar tissue that has grown into the spinal cord, and to detether him means (with almost 100% certainty) that he will come out of surgery with a paralyzed right leg.  There is a remote possability that he will lose both legs, but they don’t expect this to happen.  There is also a possability that he will be detethered, paralyzed and STILL in pain.  They hope he will be pain free after the surgery, but they cannot guarantee that he will. 

Kate has, after much anguish, decided to go ahead with the surgery because if they DON’T do it, he will continue to go downhill, continue to lose sensation in his feet and legs and bowel and bladder(everything he loses is permanent damage) and his tight spinal cord will start yanking his brain stem down, and then he could end up with permanent brain damage.  This is not an option because Joshua’s an extremely smart little guy, and she wants to preserve his cognitive function. 

If you want more information, her blog is Life With Special Needs Kids that’s listed in my blogroll.  She has listed specific prayer requests there, but I’m going to cut and paste those here for those who don’t want to click over.  His caringbridge site is http://www.caringbridge.org/visit/joshuasjourney

I’d like to blanket this child and situation in prayer so he is guaranteed the best outcome possible.  Prayer works, I’ve seen it.  Anyway, here are the prayer requests.  Thanks to all who pray.  He’s a tough little guy who really could use a break from constant pain and surgeries.  He’s been through more pain and anguish and stress in his short little life than most people endure in a lifetime.

1. Complete, permanent relief from the chronic pain that he’s been enduring.

2. Protection for his mental well-being post-operatively. I’ve been told that becoming paralyzed could make him quite angry, withdrawn & depressed, so I’m asking God to protect his mind & spare him those difficulties if paralysis is going to occur.

3. The ability for his spinal cord to be completely detethered without causing paralysis.

4. Dr. W’s ability to remove ALL of the lipoma, scar tissue, adhesions & arachnoid bands that are in Joshua’s spinal cord and spinal canal. I’d love to know we’re starting again with a clean slate.

5. Provision for anything he may need that I do not yet know about.

6. A calm hand-off when the time comes for him to go to the operating room. I don’t want the image of Joshua crying in fear, lunging for me & screaming, “Mom!!!” as the anesthesiologist’s nurse carried him away to be replaying itself in my head for the duration of his surgery, and I don’t want my child to be frightened or stressed as he is carried away from his brother & me. I am praying that he will fall asleep prior to the hand-off and thus be carried away quietly & peacefully.

Things I pray for for myself:
1. Peace of mind to be able to rest without undue anxiety & apprehension.

2. Strength to get through whatever is going to happen.

3. Wisdom to make the right decisions in every situation pertaining to Joshua, especially when I am unable to consult with Charley.

4. Acceptance of things I can’t change for Joshua without feeling guilty or angry.

I also pray for safe travel, financial provision, an available room at the Ronald McDonald House & my other children’s peace of mind, their safety & well-being, and for Megan to be strengthened as she takes on the role of “mom” in my absence. I pray for Charley to be blessed with peace in his heart as he is separated from his little boy. I ask God to keep the children’s minds happily occupied & to bless them all with calm spirits & to let time seem to pass quickly until our family is together again. I pray for Dr. W and for her assistant Jenny, that they will be gifted with focus, perfect execution of surgical techniques, and peace of mind & heart as they operate on my son. And most of all, I pray that God’s will be done in this situation.

To everyone who has prayed, is praying and/or plans to pray for Joshua in these final days leading up to his surgery and beyond, this list is for you, along with my heartfelt gratitude for taking time out of your day to lift my son’s cause before the Lord. Thank you.

Advertisements