Neurogenic Bladder

Poor baby Peytin went into the urologist on Thursday to have a routine test that all Spina Bifida patients have to get.  It is called a urodynamics test and it measures the pressure on the bladder as it fill and empties along with muscle contractions of muscles around the bladder.  The test found that his bladder has too much pressure and that his bladder and other muscles contract at the same time when they are supposed to alternate in order to empty the bladder.  Basically, he can't empty his bladder without help so now we have to use a catheter 4 times a day to empty out the urine.

So frustrating, they gave us a prescription to get the catheters from Norco and I was in there for an hour only for the super slow customer service guy to say they don't have the catheters.  He was seriously hunting and pecking to input my information in the computer.  He said the computer showed they had seven but he couldn't find them.  Is he for real...the prescription was for 30 so as soon as he saw that they only had seven he should have asked me if I wanted those seven or if I wanted to go to a different location but no, he goes in back for 30 minutes trying to find them.  I had to ask him if another store had them so we drove to Nampa.  Then we get home and I cannot get anything out for the first day and a half.  Peytin begins screaming bloody murder the second morning.  Landin takes off his jammies and his legs are purple!!!  Landin put in the catheter and finally got it to work and his legs went back to normal color.  It is so incredibly frustrating that they give us catheters that don't really work.  Now, Landin is using a feeding tube they gave us and a syringe to suck the urine out.  On top of everything, the new medicine he has to take to relax his bladder to allow it to hold more as to prevent reflux of urine into his kidneys may be making him sick.  The side effects are headache, lack of appetite, constipation, etc.  He has been not sleeping and not interested in eating since he got the medicine so who knows.  I just hope they can figure out what is going on and give me better catheters because it is almost impossible to put catheters in an infant that his kicking and screaming.    And so the saga continues!