Wednesday, April 21, 2010

The Story of Nicholas

In my interview, I gave a little introduction about my children.  I referred to Nicholas as "our sick baby".  I explained briefly his little health issues, but I didn't go into a lot of detail (simply because there wasn't room for it, plus there is a time and place for everything and I didn't feel like that was the place).   As a result of what they read, someone asked a few questions.  So I thought why not just post his story and answer those questions at the same time.  It may just help someone else or it may just let me share his story none the less (and yes, I spelled it wrong in my interview - chalk it up to trying to do an interview with 6 kids running around and working, etc.).

It all started when I was pregnant with Nick.   I was sent for a routine ultrasound.  That ultrasound showed that his kidneys (particularly his left kidney) were enlarged.  They said it could be something simple, but they wanted to rule things out.  Rich and I were sent to a genetic counselor.  We had to write out as much of our family history as possible, any diseases, causes of deaths, literally everything we could think of.  The counselor told us that the reason his kidneys were enlarged was due to cysts as a result of  Polycystic Kidney Disease.  She then went on to say that most people have this and don't even know it.  That most likely his kidney would eventually atrophy and be absorbed into his body, before he was even born.

We walked out of there confused and upset....our little guy was only going to have one kidney !?! The months wore on and dozens of ultrasounds were ordered.  Every one showed that his kidneys were still there and still enlarged. 

Fast forward to the day he was born.  I had been walking around effaced and dilated for a few weeks, nothing major.  I also thought I was leaking fluid, so I made a doctor appointment.  As I was sitting in the doctor's waiting room, I was having contractions (about every 10 minutes or so).  The doctor tested me and said that I was indeed leaking fluid.  So between that and the contractions he sent me to the hospital.  I called Rich from the Taco Bell parking lot (after I went through their drive-thru).  My thoughts were such that they wouldn't allow me to eat once I was there and I was hungry, plus I had already been walking around like that anyway....what was another 10 minutes.  LOL! I guess when you have as many kids as me, it's all routine eventually, even if you've had emergencies and had to take an ambulance to the hospital for one birth and a life flighted helicopter ride to another....sorry got off topic there for a second.

During his birth, I had a lot of trouble pushing him out.  I had an epidural (which I think are wonderful and did have another with Nathan, but I think they do make it harder to push - just my opinion).  The doctor offered to "help" by using a suction cup thing (not sure what the techincal name for it is).  The first try the suction cup slipped off of Nick's head and he tried again...same result.  Finally he came biggest baby (all 8 pounds and 12 ounces of him).  We didn't notice at the time that the failed attempts of the suction cup literally scarred his head.  Thus, the reason he has two scars on his head.  No hair has ever grown over those scars. 

Shortly after his birth they did another ultrasound on his kidneys.  They were still there and still enlarged.  He was prescribed an antibiotic to ward off any potential bladder or kidney infections and we went home.  The next day, we had a home health nurse as per our insurance stop by to check on us.  As she was listening to Nicholas' heart she said she thought she heard a murmur and recommended that we take him to his pediatrican to check.  Off we went and sure enough...they heard the murmur too.  We were sent to Children's hospital where they ordered tests, ultrasounds, etc.  What they discovered was that there was a small hole between the bottom two chambers of his heart.  We were told that it would probably, eventually heal and close on its own.  But we were on hold with any other tests on his kidneys until it did.  The waiting game continued. 

The hole did close on its own.  And he was cleared for the kidney tests and procedures, which included bladder scans, kidney scans, blood work galore, ultrasounds.....The pediatric urologist threw names at us like kidney reflux and everything.  And he continued using the antibiotic as a precaution.  During one test they had to insert an IV.  One nurse kept poking and jabbing at his foot so much that I made the mistake of looking away from his screaming little face and looked at the needle she was trying to shove in there and I almost passed out.  I thought God, now not only will they be treating my son, but me as well.  I sat down and they sent us home after they couldn't get the IV in.  We had to go back in a few weeks so they could do that all over again.  It was horrifying. 

Finally the doctor decided that it was kidney reflux, where basically the urine backs up from the bladder and it builds up fluid in the kidneys.  He told us the best thing to do was to put a stent in there, because what mostly likely happened is the flap that usually does that job, probably didn't develop correctly.  So at 9 months old, he was scheduled for surgery.  On the day of his surgery, after having Rich's parents come from Florida to watch the kids so we could both be there for the surgery, the hospital calls and tell us that they might not be able to do the surgery anyway (due to scheduling).  Rich decided to take a leap of faith and trust that God was in control and we went anyway.  They tried to turn us away, we waited hours in two different waiting rooms....then a third, after the doctor told them he was doing the surgery regardless.

When the surgery was over, the doctor told us what he did.  He said that he put a small incision and inserted a camera to make sure that it was the kidney reflux, but what he found was Nick's urethra tube on his left kidney was kinked and tied in a knot.  So, he cut out the kinked/knotted section and fused the two ends together.  Nick has two scars on his left small tiny one and a two inch one above it where the procedure was done.   We had follow up appointments that showed that the kidney was still enlarged, but it was working.  The doctor said it would probably always be enlarged, because it was filled with the extra fluid for so long.  But he would be fine.  I will say this, we did have a really hard time potty training him.  He also had several bed wetting issues (I'm not saying this to embarrass him, just trying to inform people).

At five years old, the doctor looked at his throat during a routine physical and said "his tonsils are huge" He then asked me if Nicholas snored a lot.  And I said yes.  He also slept sitting straight up in the bed or on the couch.  I would find him in different places through out the night, as if he was waking up and sleep walking or something.  Plus, he had had the bed wetting issues on top of it.  So off to Children's we went.  Not only were his tonsils enlarged, but also his adenoids.  They said the reason he wasn't sleeping so well and sleeping sitting up was that when he would lay down his tonsils would completely cover the airway making it hard for him to breathe.  It also attributed to some of the bed wetting issues.  The summer before he went to kindergarten he had both his tonsils and adenoids removed.  His sleep issues have gotten much better since then.  The wetting issues slowly went away.  I no longer find him sleeping sitting up and he usually stays in his bed all night.   Also the heavy breathing and snoring he did also aren't as bad as they once were.

I guess his issues could have been a lot worse than what they were.  I'm grateful that each one has been dealt with and that we had found such wonderful doctors.   And like I said, Nicholas is the most happy go lucky kid.  I don't even think he realizes half of what he's gone through.  Never cares about his scars.  I guess to him, it's just a part of who he is and you can take it or leave it.  We all have scars in one form or another.  His just happen to be external.


Jill said...

Thank you for sharing this. It sounds as if even though you have been through some rough times that you are blessed with a wonderful family and wonderful doctors.

Emmy said...

So glad they were able to take care of everything! That would be so hard and scary as a mother though when it was all happening.
And as a member of the scar club, I had open heart surgery at 5 and have a scar down my entire chest; they really are just part of who you are and you don't think anything of them- well until you turn 11 when everything different is embarrassing ;)

H said...

Following from Friday Follow. Isn't it difficult to watch our little one's go through surgery. My son was diagnosed with Glaucoma when he was nine months old and has had two eye surgeries and it's so difficult but they are such little troopers aren't they! Great blog can't wait to read more.