Doctors -vs- Schedulers

We saw Dr. Avellino, Kyle's neurosurgeon, on Tuesday, September 7th.  We were very much encouraged because he thought that he could take more bone out at the back of his neck at the C1/C2 vertebrae and open up some more space for the spinal cord.  This he said, could be accomplished and he would likely recommend fusing from his skull down to C1/C2.  This would limit mobility in the neck, but pave the way for the more serious surgery -- should it be needed.  Dr. Avellino said that he'd like to have a CT scan done, to confirm what he believes is the best course. 

Both Jon and I felt so much better about this more conservative plan.  We settled down to patiently wait for a CT to be scheduled.  So that afternoon, I called and asked the radiology department at Children's if the order had been placed so we could get the CT scheduled.  No order.  So I called the doctor's nurse and asked if they'd sent the order.  I called on Wednesday, no order.  I called on Thursday and spoke to Wanda at Dr. Avellino's office.  She said she'd call me right back -- I said, "Thank you.  I'll be waiting."  She called back within 5 minutes with a CT scheduled for the next day -- Friday, September 10th.  (Happy Birthday Mark!!  I didn't call, but I Facebooked and thought about you ALL day, does that count?)  See -- you can see how patient I was!

Friday, Kyle and I went and he had the CT scan done.  He  was soo good.  We were waiting in the Radiology waiting room, but Jamie, the tech, came and got us and parked us in the hall outside CT....it amazed me.  Kyle waved at everyone that passed.  A nurse who had helped us last March, stopped to talk to him, said it was so "good to see you again.  How you doin' buddy?"  He got more smiles, and high fives -- it never ceases to amaze me...people just gravitate to him.  CT complete!  Now to wait for the doctor to call.  I figured if he hadn't called by Wednesday, I'd call the office.

Monday, September 13th (Happy Birthday Lar), at about 7:30 p.m. Dr. Avellino called, he said, "It's very odd (this about 3 times) but the CT showed that the bone at C1 (which they took out in March) had re-grown and is again interupting the spinal cord.  He recommended that we re-do the laminectomy and instead of placing hardware and fusing from the occiput to C1, that an onlay bone graft will be done instead and we'll see if it fuses spontaneously."  Does it sound like I know what I'm talking about?  "I've spoken with Dr. Song and we will do surgery on Monday, September 27th."

On Wednesday, September 15th (Happy 49th Anniversary Dad and Mom) I called the surgery schedulers at Children's -- because we all know that the Doctors might tell you when surgery is going to be, but it's not a done deal until it's confirmed by surgery scheduling.  Finally heard back from them on Thursday -- "Both docs are here and available for surgery on the 27th, however, the spinal sensory monitoring team is uanavilable in the morning of the 27th and Dr. Avellino is unavailable in the afternoon."

Friday -- the 17th -- spoke to surgery scheduling -- AGAIN -- "Docs are still trying to find a day when they will both be available"  -- Might I just interject here, that I get it -- they are both VERY busy.  Dr. Avellino is the director of the University of Washington Neurosciences Institute and a UW professor of neurological surgery and professor of orthopaedics and sports medicine, as well as an attending neurosurgeon at Harborview Med Center, UW Med Center, and Seattle Children's.  Dr. Song is the Assistant Director of orthopedics at Seattle Children's, and an attending orthopedic surgeon at Children's-- these are busy men, who are doing their best for us. 

I'm a little impatient ~~ Okay, okay, okay, patience is NOT my strongest attribute ~~ but, I feel like we've been patient -- we've been going at least twice a month for clinic visits and tests for 4 months now.  Kyle's in pain -- almost constantly, you can see it in his eyes and the way he moves and the loss of his independence.  We will be patient a bit longer. 

I did speak with Laura, Dr. Song's nurse, and expressed some of my frustration and she said, "I'll light a fire under this, because it's dragged on long enough.  Call surgery scheduling on Monday, and I'll let them know I told you to call."

So we'll see  what happens on Monday......

Chant with me now -- I WILL BE PATIENT, I WILL BE PATIENT --

Although, I've clearly let my frustration show with this post, we are in a good place with great doctors who we have confidence in -- who are taking their time, studying his case, and planning the best way to help Kyle and to do their best for a more "permanent" fix. 

We are so very grateful for all who continue to remember us and Kyle in their prayers.  We feel the strength of your faith in our behalf.  And, if I may be so bold as to ask -- please pray for the doctors, that their minds will be open and clear and that they will be able to see what needs to be done, and that their hands may be guided, and that a surgery date will be agreed upon -- sooner, rather than later --

I WILL keep you "posted". 

Love you most!