Another Surgery

Originally posted April 8, 2021 -

Jacob had his regular follow up with orthopedics yesterday, and his X-rays get consistently worse every time.  His left hip is completely dislocated, the right one seems to sublux in and out depending on his muscle contractures.  Two orthopedic surgeons have told me he needs surgery -- one said right away, one said sooner rather than later.  I'm getting one more opinion before I make my decision.  

There is sometimes confusion about why Jacob has orthopedic issues and what that has to do with his brain injury.  Jacob's severe brain injury left him with spastic quadriplegia cerebral palsy.  All of his limbs and torso are affected.  Kids with CP almost always have issues with their hip joints but, as we have come to expect with Jacob, his are more severe and causing problems much sooner than expected.  Also, because Jacob does not stand or walk, his hip joints have not developed deep sockets and this adds to the problem.

In order to correct the issues with Jacob's hips -- and hopefully provide him with pain relief, increased range of motion and ease the stress on his spine -- the surgeons will need to break both of his legs.  They will angle the top of the femurs into the hip joint and use plates and screws to hold them in place.  They will also release the tendons in his groin at the same time.  The surgery is long and the recovery is brutal.  I'm not sure how well he would handle it, although he has shown us many times how tough he can be.

This decision is the hardest one I have faced so far.  There have been procedures that he needed without question.  There are surgeries with little chance of success that I have and always will deny for him.  Because he will never be able to walk, he doesn't need this particular surgery in the same way a mobile child would.  The issue for Jacob is mainly one of pain.  He has daily pain and discomfort and prefers to be lying on his side in his bed.  He doesn't enjoy outings very much because getting in and out of his car seat and chair and being handled causes him pain.  Would this hip surgery give him relief and allow him more use of his legs?  Maybe.  Would this surgery be too much for him and cause regressions?  It's possible.  

I try not to let myself think this way, but lately it just seems so unfair that a child born with a healthy and functioning body now has to have his legs broken in an attempt to help with his daily pain.  Those that hurt him truly have no understanding of his ongoing suffering.  It's unfair that they walk and talk and see and eat and do all of the other things he cannot do.  And they do it without pain.  I know I have to center my thoughts back on Jacob and focus on nothing but making the best decisions for him moving forward.Jacob celebrated his third birthday last week, and he scored some great presents.  He has new wind chimes and sound books and a saucer swing for the backyard.  He was not a fan of the cupcake frosting we let him taste, but luckily his siblings and their friends were willing to step in and take care of the birthday treats!  Now that he has aged out of ECI services, Jacob gets to visit the big kid elementary school one morning a week to see the school therapists.  He is also joining the special preschool class each morning for a zoom session which he seems to really enjoy.  They have stories and songs and lots of other happy, active and noisy kids!  We made the decision for Jacob not to attend in-person for now, mostly because it would be a 30 minute drive each way for him to go and the timing doesn't work well with his meds and feeding schedule.  I really felt he would be worn out and ready to nap by the time he got there, so it works better to join in from home for now.

And that's what is going on at our house!