Saturday, February 16, 2013

Glad I Listened

You know, after what seems like thousands of doctors appointments, it can get hard to absorb all of the information.

This week has been kind of crappy, pun intended.  Warning to the wise, I am totally going to write about bodily functions.

The boy has not been himself lately.  I took him to the doctor last Thursday because there had been an increase in seizures and some congestion.  Wanted to make sure that it wasn't something like this where there are no signs and symptoms of illness, but low and behold he truly is sick.  Got him checked for flu and strep, both were negative.  Ears looked good.  Lungs were clear.  The doc said he just had a virus.  So we just get to wait around for it to depart.

The weekend was okay, then things started to get rough.  Around Tuesday morning both Brian and I agreed that something else was going on.  Multiple times he would just curl into the fetal position, which is not normal for him.  Remember, this kid has a great vocabulary, but can not say, "I'm sick.  I hurt.  I feel gross.  My tummy does not feel good." etc.  Plus, he doesn't feel pain like the rest of us.  All the detective work I was doing wasn't pulling up any definitive answers.  Time to go back to the doctor.

I get there and our lovely Nurse Practitioner, who is more like a family member at this point, checks him out.  I tell her that I suspect a kidney stone or a bowel obstruction.  What would cause random expressions of pain, without any other outside symptoms?  He is eating, drinking, peeing and pooping regularly.  No fever, no cough, the boy doesn't look or act sick 98% of the time.  Just increased seizures and occasionally curling up in a ball.  I tell her about a previous visit I had about a year ago where the g-tube specialist told me that kids with g-tubes can get backed up with stool, even if they are having bowel movements.  It seems like everything is normal, but they really are constipated.  He also has a genetic pre-dipostition to kidney stones.  We agree that we are not taking any chances and we need some diagnostic tests.  She does a Urine and a CBC in the office, which came back fine, but alas there is no CT, x-ray, etc available there.

Off to the ER we go!  There was some miscommunication about what we were really there for and I expected the usual rigamaroll that comes with an ER visit, but this was just insane.  We were there  I am usually such a fan of this hospital.

I understand that it is hard to believe me at first glance when I say my son is sick and not acting like himself, when he is running around the room and smiling.  Sure, lady.  He looks REAL sick.  So they waste a ton of time just trying to decide if I am crazy.  Then they decide to go to the opposite end of the spectrum after talking to a doctor that we rarely see and is totally on my bad list.  They order him off of his current medication, want to change it to something that we have already tried and failed, and want to order an MRI...of his head.  Because that makes sense!  We come in for abdominal pain and they want to admit him for two days and do a long, sedated procedure for his brain?  Mercy.  I am not here for seizure management.  He hasn't smacked his head...why are you ordering this?

After a few hours and explaining myself thouroughly to multiple people, they begin to understand why I don't want an MRI.  Once again, I was glad that I had listened at one of those millions of appointments.  Truly, Cole has only had one MRI and it was when he was 7 months old.  Things have totally changed since then.  I asked our neurologist if we should get an updated one.  He asked why.  I told him that we wanted to see if/how things had changed.  He then proceeded to ask me why I wanted to know.  Then, being the awesome doc that he is, told me that in the end it wouldn't change treatment. An MRI would show white matter loss, or a brain tumor.  Cole has Dravet, we know why he has seizures.  So, no brain tumor.  As for the white matter loss, it could totally be possible.  The kid has had thousands and thousands of seizures and episodes of hypoxia.  How would it change our treatment?  It really wouldn't.  Cole changes so fast, that we treat him in the present.  So, through that explanation I was educated/reaffirmed that sometimes you don't need to do major tests just for the sake of doing tests.  I already knew this based on my work history and my insurance bills, but I never thought in a million years a neurologist of all people would say that I shouldn't have an MRI for my child, who has a rare brain issue.  Good guy.  ANYWAY....

I let the ER staff (nicely) know that we are not here for an MRI.  We are not here to be admitted for "observation".  We want to check out his abdomen.  Can we do something about that?  They suggest a CT.  okay....Why are we doing a CT that has a lot of radiation and takes forever, when we could just do an abdominal x-ray and an ultrasound?  At this point, someone has finally listened to me and called Dr Miller.  Who, thank the Lord, told the doctor to listen to me because I know what I am talking about.  So-we get the x-ray and ultrasound.  Low and behold, the child has a bunch of old, backed up stool just sitting in his colon.  Ever been constipated?  Yeah, it stinks.  Times that by 10.  We would have never known unless we took him in.  Man, this child continues to amaze/confuse me.  Absolutely nothing but mommy instinct pointed to this problem.  I am just glad that it had not turned into a full obstruction and it was easily treatable.  Plus, Slugger got to feel like a movie star.  Without fail, every nurse on staff always visits our room when we come into the ER.  They love Slugger.

So, Cole has been drinking lots of PlumSmart and getting Milk of Magnesia.  He does not feel as crappy.  We will just add this to the list of crazy phenomenons.  However, the road is still rough.

Glad I listened to the g-tube nurse, glad I listened to the neuro when he told me that it wasn't necessary to do an MRI on Cole at this point.  Unless he has had head trauma or something, but not for a bellyache.  Otherwise we could still be at the hospital, admitted for nonsense and possibly catching whatever germs are floating around the building.

Cole is still not himself.  In fact, today we wondered if we were going to make another trip to the hospital.  This time for signs of low blood pressure.  The guessing continues.

In between playing detective we have had fun this week.  Valentines was always a big deal at my house growing up.  We declared the entire week up to it, "Love Week".  So for Love Week I have been making lots of heart shaped food, we got small presents, the house is decorated (unlike Christmas) and we have been enjoying Cole's excitement.  He was thrilled with the Valentines he brought home from school and little art projects throughout the week.  When he is asked who his Valentine is, he says, "Daddy".  BIG surprise ;)

1 comment:

  1. Hi...just wanted to drop a note sending lots of love. I read your blog whenever you post and am in awe of Cole's strength and the love he has from his family. You are all amazing and such am inspiration. Just wanted you to know that I send endless good thoughts and hope Cole is hanging in there. Many hugs your way,


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