Sighs of Relief

I got to breathe easy today after a night of serious prayer and many tears.  I was so worried about the testing that my baby had to go through this morning, and what the results would mean for us.  We didn't even expect to be getting such off the wall news about his bladder and this reflux that seemed to have come out of nowhere.  This was such an unpleasant surprise, it knocked my socks off to be honest.  I had spoke to one of the urologist last night, and she was telling me what to expect from the procedure and what the possible outcomes could be.  We talked about some worst case scenarios like surgery and catheterization at home.  The thing that really was scary to me was that she kept going back to the possibility of LJ needing to be catheterized at home.  I was scared to death thinking about having to do this to my little boy everyday.  I was dreading the the thought of him crying and begging me not to do it.  He loses his mind every time he needs to be catheterized for any reason, like testing, or to get a urine sample.  I was sick to my stomach, and I am still shivering even thinking about having to put him through that on a regular basis.  The testing that was done was the most extreme form of testing that they do.  LJ had a catheter in his bladder, and a probe in his rectum to measure the pressure of his bladder during filling and when he releases urine.   I was so relieved when the doctor came in this afternoon and told me that the head urologist was pleased with the results of the urodynamics study though.  My heart was literally in my mouth when she walked through the door.  They did recommend that we come back in about a month to repeat the test, and they started him on Ditropan, a medication to help relax his bladder.  They also want LJ to participate in something called Bio feedback, which I don't full understand, but it is something that will teach him how to work on tightening the muscles of his bladder, like through exercises.  It is suppose to be playful and taught through games and videos for children.  I was definitely happy to hear that.  All of these things are so much better than my baby having to uses a catheter a couple times a day.  If it was something that I needed to do, just as I had to perform his dialysis at home, and take care of his broviac when he had it, then I would do it, but for his sake, I would prefer that he have the least amount of painful or invasive things to endure.  I am so thankful that God truly answered my prayers on this one.  It's the thing that most people don't even think twice about that some of us pray for.  Thank you God!!!

Surprises

Today has been a day full of surprises, and not in a good way.  LJ and I were supposed to go home this afternoon, but that didn't happen.  We are still here at Boston Children's Hospital waiting for some answers, but there are a few different issues that have arisen since we got here.  Originally, we were coming to find out some answers to why LJ is having all of this diarrhea, but now things have gotten worse than what I thought.  During what was supposed to be a routine yearly work up, LJ had an ultrasound of his kidney and a VCUG (voiding cystourethrogram; a test to look at how well the bladder, kidneys and urethra are working.  It is administered by inserting a catheter into the child's bladder, which is obviously uncomfortable, and drove LJ crazy.)  After the VCUG, the doctors noticed that LJ had some reflux into his kidney that had not been there before.  Now, tomorrow, he has to undergo more painful and invasive testing called urodynamics.  This I am not exactly too sure about because I have yet to talk to the the urologists about the extent of the testing that he will be going through.  Some testing can be relatively simple, but others can be more extensive.  We just have to wait again until tomorrow to see what happens, and what the results are.  We still don't have anymore answers about the diarrhea, except that before we got here, I found out that LJ tested positive again for C- Diff.  This time though, they are going to try a different medication since the vancomycin didn't help before.  Other than that, the actual scope didn't reveal anything except that his colon and intestines look healthy,  They did biopsy some of the tissue to see if there was anything else that could be found under the microscope.  We are waiting to hear back about that also.  So, once again, not many answers, just waiting, until tomorrow.  Prayers continuing to go up, always trying to stay positive.

Back in Boston

It's been a while since I've been able to post anything.  We have been so busy though.  LJ and I just moved out of our apartment, and he's been doing really good adjusting to Kindergarten.  We've been dealing with this ongoing battle with whatever "stomach bug" he's had since forever it seems like, and it has led us to Boston, which is where we are now.  We flew here this morning so LJ could be admitted.  They are giving him something to clean out his system tonight (good times!!!), then tomorrow, he is scheduled for an endoscopy.  They are going to look for any signs of infection, inflammation, or anything that can give them any information as to what could be causing my baby to still be suffering from this tummy trouble.  It's so crazy that with all of the complex issues going on with him, this is the most pressing thing going on in our lives right now.  If he didn't have this to deal with, he would be doing so good, because otherwise he's been doing really good.  So, tonight, we're here, waiting for this procedure tomorrow, hoping for some answers......Waiting!

On another note, I think we are going to start making more videos, that way we can keep you guys posted a lot easier.  So be on the look out for those!