Have a Heaping Helping of Hemodialysis

Well, much has happened and I thought about taking the blog down completely.  Everything seemed too personal, too painful, too difficult to put into words.  Sonshine was being monitored each week after he left the hospital and after a few test results that showed that creatinin and BUN levels might be heading back where we were hoping, everything started to slide off the cliff.  Lab levels of everything started to go up and the doctors at one time had Sonshine on 3 different blood pressure medications just trying to get it down.  Finally, Dr. Cheam, Sonshine's Pediatric Nephrologist said it was time to prepare for hemodialysis.  We left the office in shock.  I don't think there is any way to prepare yourself or someone else for news like that.  I do know that Dr. Cheam could not have done a better job.  We left the office that day with a referral to a vascular surgeon and the promise that the office staff would work with us to get some radiographic films of the veins in Sonshine's right arm and hand.  The next day, we were at the radiology lab for the films.  Torture to watch since Sonshine didn't have any place that hadn't been poked with a needle in the past few weeks.  Once they placed an I.V. in his hand, they were injecting dye and taking pictures.  The radiologist was an ass.  He didn't come in until Sonshine was prepped, on the table and ready to have the dye pushed.  The dye made Sonshine violently ill and although he had not eaten, was dry heaving and feeling awful.  The doctor was visibly annoyed.  Sonshine was sobbing.  My 16 year old man cub broke down and I could do nothing to help.  They got the films that they needed, packaged them up and sent us out the door, films in hand to visit the vascular surgeon. 

The vascular surgeon saw us on Wednesday and wanted to do the surgery to make the fistula on Friday since he was leaving for vacation after that.  We were the last surgery on what was a very long day of procedures for the surgeon.  Never, never, ever be the last patient for surgery.  In addition to the fistula, the doctor would be inserting something called a PermaCath.  A catheter that has two lines (one arterial and one venous).  The dialysis nurses would be using the catheter until the fistula was mature and could be used for dialysis.  A fistula is the joining of a vein and an artery.  When that happens, the vein has to grow and get bigger to accommodate the increase in blood flowing through it.  The patient has to exercise the hand and arm to get the vein to increase in size.  Once the dialysis nurses feel that it has matured and the vascular doctor has examined the patient and given the clearance, the nurses will begin to "train" the fistula. 

Change Is The Only Constant...

Change has been the norm around here lately.  February 12, 2012 Sonshine went into the hospital for elevated Creatinin levels.  He was just trying to skip some school and fake being sick so he could come home from school early since his sister was coming home from college and his brother and fiance were coming in from Seattle for a couple's shower that we were throwing for them.  (This he revealed to me later in the hospital.)  His teacher sent me a text and told me that he didn't look so good.  I also got a text from Sonshine saying that he had been sick at school.  I picked him up, called the pediatric urologist who said let's not mess around, given his history, blood tests, urine tests, and a kidney ultrasound happened faster than you can imagine.  Around 4:00 p.m. Nurse Linda from the office called to say that the creatinin was around 4 and he flunked his test.  Get him to the hospital.  Enter the Pediatric Nephrologist.  Nice man but whenever he's around it's because things are definitely not good.  Disturbing news.  Tears.  More tears.  Even more tears.  The kidneys are failing.  Could happen quickly from here, could happen relatively slowly, but they are definitely failing.  Blood pressure is way up.  My 16 year old is going on 3 different high blood pressure meds.  A week in the hospital.  In the middle, throw a couple's shower and get right back to the hospital.  We are lucky to be able to be at a hospital connected with Children's Miracle Network.  It enables us to stay near home and for Sonshine's friends and girlfriend to walk to the hospital from the high school after school and visit.   Starting the last week or so of February, we are at the nephrologists office once a week.  Blood work weekly, urines weekly.  Blood pressure won't come down where the docs want it and I can see my son's legs starting to really get swollen.  the kid's arms look like a pincushion.  I would do anything to trade places.  Anything.  I pray, I beg, I'm angry, I'm sorry.  We are told at the beginning of April that we are heading toward dialysis.  Watch the numbers some more.  BUN and creatinin, phosphorus, potassium, systolic, diastolic.  Take the medication every 12 hours.  Oh, by the way, you will have to show 6 months of A+ medication taking dedication as part of the process to qualify for a kidney transplant.  Oh my gosh, transplant?  We go to Disneyland.  Really?  Yes, really.  The kid loves that stinkin' mouse and right now as far as my husband and I are concerned he can have whatever he wants.  To be continued...