searching for the finish line

Since last writing we did in fact make it home for thanksgiving.  We have been blessed by many with help, meals, and encouragement.  My last entry was hoping for the homestretch.  It was not to be, and a whole new race has been started.  The last 6 1/2 months for Shea has been a grueling marathon.  We have all tried to refuel and refresh, but the run has been long and uphill.  Right now we do not see the tape of the finish line, and that makes it harder to keep the pace.  My boy is now up to surgery number 12 total, 6 of which have happened since June of this year.  I will be honest and say I do hold tight to the fact that he is stable from a medical standpoint, and his "general health" is good.  We are much luckier than so many others who have children battling life threatening problems.  I do give thanks for this.   I know of a sweet baby girl who we played briefly with last week on the play deck... who has gone to heaven without warning.  Our struggle can never compare to so many out there.... but we are tired.   We are angry...without anyone that is currently involved to really be angry with.  We are angry with spina bifida, we are angry with 4 years in an institution causing malnutricion and health problems that could have been avoidable that likely contribute to much of this struggle, we are angry that a boy who should be racing and jumping and wrestling and making messes in the mud is laying in a sterile white hospital bed again.  But... we are supported and blessed in many ways.  So we are humbled....  and we hope hope hope for a light at the end of this all. 

We were able to get home the evening before Thanksgiving, with a drain.  We had a difficult but much needed 7 days at home thinking and hoping we might be ending the race,... but as we pressed on, each day showed clues that the end of our run was not to be.

Drainage didn't stop as it should.  Drain site deteriorated, low grade fevers persisted, trips were made back and forth to the clinic for observation, watching, waiting.  Wednesday night the drain hole opened wide and a rod was clearly visible, and also resting in a location it didn't belong.  At the same time another wound was forming from pressure from the inside out because of one of the new lumbar screws that we now know had started to loosen and back out of it's secure spot in his vertebrae.  Shea followed all the rules, infact we gave him more rules to follow than the doctors instructed... but his body and bones wouldn't hold up once again.

Thursday was spent outpatient, appointments, planning, scheduling, booking, xrays, lab work and on....

Today the screw that loosened was removed, and the portion of the rod that moved had to be cut.  They did decide that because it doesn't seem to be infection based, that it would be wise to close the incision for now, rather than rush into the wound vac.  That will all be watched and assessed carefully over the next few days.  I am thanking God that the very long central incision did not need to be reopened today as it has 5 times in the past.  Another small blessing is that the stitches were ready to be removed on that long main incision and they were able to do that under general anasthesia today and not make Shea endure more anxiety and pain of having this done while awake. 

We have started a rather aggressive regimen help him control his anxiety and panic type attacks with 2 medicines, and a plan for counselling related to repeat medical trauma.  This prong of treatment I feel is just as important at this point.

Our next phase of the race is solving mysteries.  We need to get to the bottom of why his bone continues to reject hardware, why every tme we fix a problem it causes 2 more.  Between what the doctor has suggested and what I plan to ask for, we should be investigating nutricional iput, GI efficiency of absorption, bone density issues, allergy, continued ruling out of infection and possibly working with endocrinology.

We will watch anxiously to see how the wound repair progresses, and if having fixation on the left side of his lumbar spine only will be able to fuse and succeed.  We have been given some options of what may need to happen with larger more involved surgeries of anterior fusion through the abdomen, or pelvic fixation points if it does not maintain intact.... but I would like to not think that far ahead yet.  We will take saturday and sunday as they come.  We are on the surgical schedule for monday for either wound vac application or the surgery mentioned above... but our hope and prayer is that none of those will have to happen.

As for the rest of the family.... the kids are strong and resiliant, but could also use your prayers... especially danielle as all of this takes it's toll on them also.  Dan... my partner.  Thank you for all of your hard work, and your love for our kids. 

Thank you to all who are helping us through this is many different ways.  I have an image in my head of the family trying to get shea through this race toward the finish line, and many of you offering sips of water, clapping, cheering, manning the first aide tent, directing traffic... etc etc.

We will hit the finish line at some point... I'm just not really sure when... so until then... keep on cheering.   Thanks....