August 12, 2012

Clayton has continued to start tossing and turning every night around 4 a.m.  This morning around 4 he threw up again too.  I'm not sure what the reason for all of this is.  He has no fevers, blood pressure is great, his input and output are excellent, he doesn't have the runs and during the day he acts perfectly normal and even wakes up smiling.  My best guess is it has something to do with his antibiotic and maybe he needs to be on an antacid while he continues on the antibiotic.  The good news is he gets to shower today!  First time in a few weeks! Washing away that sweet little boy stink.  

It appears we are definitely doing the riskier of the surgeries, the vertebral column resection, in hopes that it will gives us more long term freedom and overall better results. Very nervous, but I know we have the best doctor to do it.  Only a very few doctors in the world are qualified to do this surgery correctly and ours is at the top of the list.  Dr. Sucato is to pediatric orthopedic surgery what Dr. La Quaglia is to pediatric solid mass tumors.  They rock their fields!

Just 15 days until surgery and in less than a month Clayton and I should be home!  After 3 months living in the hospital the idea of going home seems too good to be true.  God willing though we will be home soon...and home safely...and Clayton will be a lot straighter!  We would have a 6 week post op visit back here and we know we have to get scans immediately after his recovery and then, two months after surgery we have to have his stent replaced/removed or something.  So we will still be busy, but we will be home.  Mostly.  We might have to go to Birmingham for scans.  Figure all of that out later- we are not going to NYC for scans though this time.  Maybe for the next set.  If we choose not to do the treatment in Michigan and do natural therapies at home, then we will probably still go to NYC for scans every six months and see if we can do our scans in between closer to home.  NYC does more thorough bone marrow checks, so it is still important to check in with them.  Again, still sorting all of that out.  We have to continue doing three month scans for another two years.

Here is Clayton's model of his spine.  We would be removing one vertebrate- the one in the middle at the apex of the curve.  This surgery could give us an additional 30 degrees of correction!  That would bring his curve down to a 32 or so based off of our last X-rays.  Hopefully even more than that since we haven't had X-rays in a while.  That's 70+ degrees of correction in three months.  Rocks my world!