Friday, December 18, 2015

in surgery now, what is the plan, how did we get here?

- Today's surgical plan:

All involved, neuro/ortho feel that a full exploritory surgery to find the leak is too risky.  There are 4 likely places the leak could be * the site that tore and was repaired in the lumbar spine on nov 13th, the site that tore and was repaired during the june surgery, * the front portion of the spinal cord where it had to be released from the vertebral column in previous surgery * the thorasic nerve root that was removed in order to place the cage in june.   Because of severe anatomical differences and scar tissue from his spina bifida and the previous surgeries they have to work from the top ( normal dura ) down and would be too invasive, make his long scar even longer and be too risky.  Of these 4 sites most likely 2 of them could be very difficult to fix.  The fear also with this method is that although his ventricular pressures are now "in the high normal limits"... that even if they found the tear and repaired it that the high normal pressure would still be to much and re tear the fix. 

The plan we have decided to move forward with is to focus first on getting his ventricular pressures to "low normal".  Also just opening the area of spine where we can actually see the leaking through the skin, and pray that it's there in the dura and obvious.  If so Dr Reynolds will repair.   ( Dr Li is not here, but has been consulted repeatedly throughout the last 24 hours and approved and tweaked our plan... Dr Reynolds comes with very good reports as well )  Thirdly the fascia, soft tissue, skin will be thouroughly reinforced from the inside out in layers, rather than just incisional stitches.

The next step to KEEP ventricular pressure low, so that if a dural repair is made it can stay intact, and if a significant leak can not be found and repaired that pressures are nice and low to slow the rate of leak.  A slow leak contained within the body is minor problem as compared to any leak that has a channel to the outside world.... they are saying we are extremely lucky that through all of this, since mid november that he has not contracted central nervous system infection.

How do we keep the pressures low?  He will again have an extraventricular drain / monitor.  We will again be in PICU.  Again, anytime he changes positions or moves the position of his head his monitor has to be zero'ed ( means a nurse comes to help with every single position change, even raising or lowering the height of his bed, or the angle of the head of his bed ) They are going to drain a significant amount of csf to decrease pressure, and watch him until monday or tuesday.  If the lumbar leak no longer can find a way out of the back with the better repair down there and the created low pressure system we will know he's headed in the right direction. 

We know that he needs lower pressure than the average kid, to protect the tears... so at this point if all has gone as planned on monday or tues a shunt will be placed.  He will have 2 mechanisms in place to keep pressure low now... the shunt and the ETV.  Today the resovoir will also be removed.  Another important reason to wait to place the shunt other than to make sure the "low pressure fix" can be accomplished and that it actually works, is so that we can have 48 hours of clean csf cultures from time of last external leak.  A shunt can be placed when there is infection or chance of infection.

This is where we are now.... below is how we got back here...

wednesday after discharge we had a nice 26 hours at home, some decorations were put on the tree, lots of hugs and cuddles were shared, and a sleep in our own beds.

- thursday afternoon we received the news that we knew we would, but we hoped we wouldn't.  The lumbar leak was infact Cereb. Spinal Fluid (CSF).

- Neuro had instructed that this type of leak was not one that could be left unaddressed, that it wouldn't heal itself without intervention.  If he was not showing symptoms or not leaking through the sutures / skin... then it could be done after Christmas, soon but not urgent.  

- However thursday afternoon the CSF again began to escape through the incision and sutures.  The risk of central nervous system infection is too great.  The original plan from both Dr Li and Dr Sanders was that the dural tear would be repaired by ortho at home....   after evaluating the complexity of shea's case, the fact that Rochester neuro doesn't deal with ETV's, the fact that some staff at Strong didn't even know if Rochester neuro would take Shea back as a pt, and that Dr Sanders wanted a neurosug to be present during the procedure it became clear that Buffalo neurosurgery would again take point on this issue.

- by 5 pm on thurs after doctors had conferred "shea's" personal resident, Dr Meyers called and said Shea needed to be admitted that night so that cultures could be started, mri, bloodwork etc...

It's now Friday the 18th, one week before Christmas, and he has just been wheeled back to surgery.  He tried to be so brave, but the tears and the screaming and calling out have come.  I will see him in a few hours, but ohhh my heart is broken for him,... and for my family at home.... what this son of mine has been through.


  1. What ALL 6 OF YOU have been through...the Grandmas and the Grandpa also. ♥

  2. Fervent sorry for his pain and your exhaustion....

  3. My heart continues to break for all of you, Liz, especially sweet Shea. I wish I could be with you during all the agonizing waiting just to provide some comfort. May God bless you and keep you close. Vicki

  4. So many prayers for Shea and all of you. I hope this surgery will be a success and you all will be home together soon. <3