December 12, 2014

Changes Are A Coming

Clayton's kidney disease is progressing.  For years his kidney disease has been stable except during those times of chaos during stent procedures or chemotherapy aftermath.  That poor kidney has made it through so much.  And despite what we knew to be true in the early months of Clayton's life, George and I had hoped that kidney would last him a lifetime.  Unfortunately, his creatinine is beginning to rise and his BUN and potassium levels are elevated.  His blood draws from right before Thanksgiving alerted us that something was off and then a routine ultrasound followed by another set of labs confirmed this.  We have a number of doctors to meet with about this and more labs to do.  
We have NO details right now about the future.  We have no idea how quickly his kidney disease could continue to progress.  Some people's progresses over months and others over years.  Clayton has a lot working against him.  All we know is this...
We will be trying to have any major surgeries done at Nemours Children's hospital in Orlando.  We love Nemours in Pensacola and would like to keep it in the "family".  It is easy for doctors within Nemours to communicate and organize Clayton's care.  Major surgeries that could result in complications leading to dialysis or transplant cannot be done in Pensacola.  Yes, there will be a major surgery in his future.  We don't know just when, but in light of recent events possibly sooner rather than later.  When I say sooner the best estimate I can give is possibly within six months.  Could be weeks or months.  I don't know. I know the doctor in Pensacola hopes to do weekly labs and get us through the holidays, but we have no idea what Clayton's body will do.  I am monitoring his blood pressure and other stats from home to help alert me to any abrupt changes.  And we are watching his diet.  Yes, his diet.  Diet can be a big deal in helping not to aggravate kidney disease.  No more bananas (because of potassium).  We know that his kidney function took a bad turn between his labs at the end of September and those at the end of November.  The good news is that his creatinine stayed stable between November 24 and December 10th.  We have no idea where things will go from here...Just watching and waiting.

On a positive note, we have been immensely blessed with our urologists in this area.  First, Dr. Terry (he was retiring slowly so we switched) and now Dr. Wehry.  Both of these doctors personally call me on he phone and talk to me.  I remember being in labor and Dr. Terry coming to the delivery room to check on me.  He was at the hospital waiting on Clayton. Love.  The man even gave me his cell number and missed part of a vacation one year to help Clayton when he had his hemorrhagic cystitis.  And the past two nights Dr. Weary has personally called me on the phone to discuss Clayton.  Not a nurse, he himself called.  Which he has done on other occasions as well.  These men are just the best kind of doctors there are.  

That's all I know for now, I will update as I know more.  

To our family:  This is your update.  I know many of you might not like it, and I'm sorry.  Kind of.  I don't want to talk about this beyond what I put on here.  I know y'all will have lots of questions and I have tried to make it clear on here I have no answers to anything right now.  Please respect my right not to talk about this.  I am very aware that this might be hard for y'all to understand or upsetting for y'all.  This is incredibly difficult for me and my way of dealing with it is to not have to explain things over and over or stress again and again that I just don't know about things.  I don't want to speculate what the future may bring with anyone.  I am giving people what I know here and I hope that can be enough.  It is all I have to give.  We love y'all.

Bottom line: Clayton's kidney disease is getting worse.  There is hospital time in mine and Clayton's future and probably a few trips to Orlando (consults, surgeries, etc.).  Clayton had a little break and his life is once again going to get complicated.

Please pray this ridiculously sweet boy can have a peaceful Christmas at home!

No comments:

Post a Comment