The Time To Make a Difference is Now!

July 31. 2013

So we have yet to hear back on when we will do the cystoscope/ stent placement.  I have called, the doctors here have called and and Dr. Jacobs even called me Friday to say he had time this week to do it.  So why his scheduler has yet to communicate with myself or anyone at this hospital, I not know.  Dr. Sucato even personally called Dr. Jacobs last night to ask why we haven't heard anything.  Dr. Jacobs said he was unaware that his scheduler had not yet been in contact with us.  So we'll see...Its extra irritating because they are concerned about whether or not they will be able to get the stent in since the x-ray test did not show any urine going through his ureter.  This begged the urologist to wonder if Clayton may need another pyloplasty.  Just what we need!  I have told them that if he needs that we will not do it here, we will do it in Birmingham with the same man that did his original pyloplasty.  If the cystoscope determines he does need a pyloplasty...again...then that means we will need to have the nephrostomy bag until after his back surgery.  We would keep it through then, recover from his back surgery, and then essentially head straight off to Birmingham for the pyloplasty.  Oh what fun!  

This is why I had to leave my job.  Managing Clayton's health is a full time job and it takes everything I have to do this.  There is nothing left to give to friends or work.  For those of you who call or text and I don't answer or don't reply, please don't take it personally.  I'm just tired. I don't have anything to say and even if I love you, I don't often feel like small talk.  It isn't personal, it doesn't mean I don't care and I'm not trying to ignore you.  I just don't feel like small talk.  And when I'm home, I don't mean to be rude by not wanting to go to your house.  I'm a home body who rarely gets to be at home and I want to be at my house.  Again, it isn't personal.

July 28, 2013

Still doing traction and it looks like we will be doing it all the way until our original scheduled surgery date, August 27.  So a month left to go. Plus recovery time.  We expect Clayton's recovery could take up to two weeks.  We now know we will be doing one of two surgeries: either grow rods which require follow up outpatient surgeries every six to eight months, but is a less invasive initial surgery or a vertebral column resection (VCR) which is much riskier surgery with a longer recovery period, but does not require follow up surgeries.  The grow rod would require follow up surgeries until Clayton is roughly 15 or stops growing.  The VCR would hopefully solve the problem for life by removing the troublesome part of his spine now and fusing it together on either side.  This would mean that section of his spine would never grow, but he would be able to grow above and below the fusion.  This would also mean there is a future risk of the sections above or below the fusion that can grow developing a curve that would mean growing rods, traction another surgery or something down the road.  But it might be that no curve would develop and everything would be fine.  Unfortunately, there is no way to know.  There is also the possibility of some drainage occurring from the fusion that would bring us back to the hospital later on.  The growing rods have a big risk of popping out and are not the best option with Claytons kyphosis, so the doctor seems to be leaning towards the VCR.  They've made a model of his spine and we will talk more about it later on.

Friday, we did a test with x-ray to see if some contrast dye would show the ureter draining to the kidney.  It didn't.  So since the ureter is not draining we are going to head back over to Children's Medical Center to do a cystoscope to see if we can see what the blockage is and we will likely put in a new stent no matter what.  A new stent would get us through the back surgery, then after we get home, we could go to Birmingham to our urologist there and have him figure things out moving forward.  We should hear Monday when we will do that procedure this week.