Saturday, October 22, 2011

We would like some answers please.

So it all started the Saturday after we returned from the beach.  We found something pink in CJ's diaper in the morning that looked like it could be blood.  There wasn't a lot there, and it looked like it could have been caused from skin irritation.  Decided to just wait and see.  A week later, I changed his diaper in Pennsylvania at my grandparents' 90th birthday party-

and we found some more.  It looked like it came from his urine. CJ was not feverish, and was his happy self.  Monday and Tuesday we saw more, and finally I decided to call the doctor on Tuesday (after of course I found out from the dentist I needed a tooth pulled.  Not sure if I'm convinced this needs to happen, but we have put this situation on the backburner.)  They told me to bring him in that day, so begins our first trek to the doctor's office.  Of course I had already googled blood in the diaper and was sufficiently freaked out.  After waiting forever to collect a urine sample, the doctor told us there was some blood in his urine and that I should get his blood pressure taken at the hospital (Seriously?  A pediatrician's office does not have a blood pressure cuff small enough for a baby?) and then make appointments for an ultrasound and a nephrologist visit.  
Does this little man look sick to you?  I didn't think so.  Neither did the doctor.  I don't think he ever was.  Anyway, we did need to check his blood pressure to be sure, because if it was high he could have some major kidney issues.  So last Wednesday we headed to the hospital.  We needed to be quick because we were planning on heading to Syracuse on Thursday for CJ's baptism.  About 1:00 that afternoon we find that his blood pressure was normal and I call his doctor from the hospital to let her know.  She too was happy with the numbers.  We breathe a sigh of relief and I try to start preparing for our trip.  Around 7:30 that night the doctor calls me and says that she just looked at some blood pressure chart and realized that his blood pressure was on the higher side of normal and that we should get some blood testing done to make sure his kidneys were functioning.  This would require ANOTHER trip to the hospital.  We wanted to leave at 8 AM the next morning, so she made some calls and we were able to get it done that night.  Maybe she felt badly when I made it clear that I called her from the hospital earlier and that it sucked that we had to go back.  Little Man was such a trooper getting blood taken from his heel and dealing with his crying mother again (I was so good until I got to the hospital and realized I had forgotten my wallet...) by 10:00 a call from the doctor let us know that his blood test came back fine.  We were able to have a nice weekend in Syracuse, and even found that CJ's urinalysis came back negative- aside from the little bit of blood that was found.
Kevin's grandmother meeting CJ

Mom and Mary Beth in Skaneateles

CJ in his baptism outfit

CJ and "little" Anthony

Breakfast with our friend Debbie

Okay, back to reality.  Keep in mind that we were still finding "blood" in the diaper here and there and CJ still seemed perfectly fine.  Tuesday I took CJ to get an ultrasound, and from that we learned that there was a part of CJ's kidney that was minimally enlarged.  Both the pediatrician and the nephrologist the next day stated that this is fairly normal, but it could also mean a couple of things.  So onto the nephrologist visit.  I took in the ultrasound disk, blood test and urinalysis results, and a diaper from that morning with some blood.  First thing he said when looking at the diaper-"I don't think that's blood."  WHAT????  Then he looks at the urinalysis results and shows us that there were no red blood cells in the sample.  Are you kidding??? Shouldn't his pediatrician be able to read these????  He wanted to do another urine sample so of course we had to wait for some peeing.  In the meantime, he said with the enlargement CJ could have what is called reflux (not acid) and that this was something he would grow out of, but we had to protect him against infection.  So, we were seeing if the urine culture came back positive.  Or, CJ could have uric crystals or "pink diaper syndrome."  This is could mean he is not getting enough fluid, or again it could be something he will just grow out of.  Funny thing is, I asked his pediatrician about this because I read about it on google, but she said that it really only occurs in very young babies.  The nephrologist said that it could start now at 3 months.  Ugh.  Finally, CJ peed (and pooped) and the doctor went to look at his urine under the microscope.  He came back and was not happy because he found some white blood cells (still no red).  He wanted to send it off for a culture to see if CJ did indeed have an infection.  I was supposed to call back on Friday.  
Fast forward to Friday.  Basically, the urine was contaminated (ummmm he did poop!) so they wanted us to go to the pediatrician to get ANOTHER urine sample with a catheter this time.  This poor little man still was happy as can be and they wanted to stick a catheter in his penis?  The pediatricians agreed that they should never have sent the urine from the poopy diaper in the first place and that we could try a bag one more time and see how that comes out.  2 hours there, no pee, ended up getting the sample today at home.  Still no answers.  

I know this has been a long update, but it's been a long 2 weeks.  First of all, I have been an emotional wreck, especially during those first 2 days before our trip.  I think I have cried more than CJ!  How can I hold it together when he sick later down the road and he actually can tell I'm upset?  All of these contradictions have been bothering us as well.  We were recommended this pediatric group by several people so we definitely want to trust them.  I am one who will listen to whatever a doctor says; after all, they are the ones who went through years and years of schooling for their degrees.  It really is painful to not know who to believe.  Plus, poor Little Man has been poked and prodded so much- he still may need a catheter for either another urine sample or a test to see if he has the reflux- do we really need to put him through all of this?  This question has been a cause of stress and debate between Kevin and I- but we need be able to cross things off of a list.  

We don't have an end to this story yet- but pray that we can get some answers soon and that these answers will make most of the running around and stress of the last few weeks a waste of time and energy.  We need to get back to my continued enjoyment of being at home (and, well, I guess I need to take care of this bad tooth- let's bet on how many differing opinions I can get on interal resorption.  Start your googling now.)

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