Friday, November 13, 2015

So Far So Good...

Shea's surgery started at noon today and ended by 530 ish.  Long.... but much much better than the 13 hours in surgery last june for sure.   He is off oxygen, has pain but it's not severe, and is stable and recovering.  He looks much better than he did post op in june.

Following is way too much info for most of you! but if you're interested it's therapuetic for me to write it all out, and helps me to have a written record when my memory starts to fail and I need to look back :)

It was discovered from last weeks xrays, done when his screw came through his skin again that:
- his lumbar kyphosis ( think of kyphosis as a really slumped lower spine position, that because of it's yucky position can't support the spine above it well ) had worsened as compared to the mid october xrays when he had surgery then.
- the reason his kyphosis was progressing a few months ago, is because the fusion of the lower segments of his original surgery had failed ( due to his spina bifida, bone integrity and healing is not always ideal )
- additionally the kyphosis progressed since mid october because in the last 3 weeks the lower most screws did start to come loose from the vertebrae they were placed into. ( you can see it plainly when comparing october xrays to last weeks)

For these reasons the alignment of the midspine continued to worsen, pushing the screws more prominantly into the skin of his back.... the perfect storm.

The concerns going into today's surgery were:
- the only way to correct the progressive and worsening lumbar kyphosis ( which is the opposite curve of a natural lumbar spine, lordosis) was to lengthen his rods, which requires inserting more screws.  His thorasic rods were removed and longer ones put in place.
- the lumbar vertebrae that would need screws posteriorly are right at the level of his spina bifida lesion, leaving less boney material to work with, and possibly less bone integrity in general
- because of the spina bifida lesion, the thecal sac, his keloid scarring etc etc, visualization of the area was harder than normal, and Dr Sanders said he had to decide placements by feel rather than by sight.
-there will be concern over the next months about whether this fusion will "take" or not

The good news is!!
- Dr Sanders feels the "purchase" of the screws he put in today was very good.
- very little blood loss
- No loss of cord conduction through the surgery which was montitored by electrical studies, and his legs although heavy and weak are moving right now!  huge huge huge sigh of relief
-they successfully used bone graft from his pelvic crest
- because of the soft tissue complexity of that part of his spine the dura did get torn or cut with some csf leak, but it was promptly repaired and the leak stopped.

The plan:
- bedrest for now, allowed to roll side to side with help at least every 2 hours
- We will be getting a complete spine MRI from top to bottom under some sort of sedation before we are discharged. ( this will help Dr Li address the size and stability of the syrinx )  Yesterday's non sedated MRI gave us only a few good shots, because shea's panic set in and they couldn't get him to be still enought to complete the test. 
- We tried oral valium before the surgery today to help with the panic, but it didn't give any relief.  Thankfully he is much calmer now that it's over.
- It sounds promising that he will be out of school for the shorter range of time, compared to the longer range that was originally a possibility
- The fusion site will be watched closely.  If it doesn't fuse from this posterior approach, anterior approach through the abdomen may be needed... but we are going to stay positive and not even think about that right now!
- tomorrow's goals will be for the tummy to wake up, so that he can be progressed to a soft diet, hopefully remove the foley cath, and find out how much longer he'll be on strict bedrest.  My goals will also be to get all his meds straightened out, bc none of his baseline home meds were ordered. boo
- also we'll start the weaning process from the IV morphine if able.

Thank you all for your support, concern and prayers.  I will keep you all posted.  


  1. Dear are awesome. We are praying for you. For your Mom. For your Dad. For your Sisters and your Brother. We are praying for your Grandmas and Grandpa. We pray for your doctors and the nurses caring for you. Sending tons of love to all of you. God be with you!

  2. Please let Shea know that I'm thinking of him!

  3. Glad to hear everything went well...looking forward to seeing him when he gets home. Keeping you all in my thoughts and prayers... :-)

  4. Glad to hear everything went well...looking forward to seeing him when he gets home. Keeping you all in my thoughts and prayers... :-)

  5. Wow. Praying for all the positive scenarios and for Shea and Mom and Dad...much grace, wisdom, and strength in the days ahead.