Tuesday, March 6, 2012

Reality Bites

I'm really not sure how to even begin this post. 

This past week has been a whirlwind.  It has been awful. 

And there is no immediate signs of stopping.

So here goes:

On February 20th we traveled to Children's for Matthew's neurology appointment. 

That went great, surprisingly.  The neuro commented about how good he looked.  She even said we were okay to come back in six months as apposed to the normal three. 

Praise God for His miracles!

Then reality hit.  Matthew had green bile leaking through his j tube.  Our neuro suggested we head over to GI to have them take a look at it.  We went in.  We told the nurse.  She said she thought it was fine, but to go get some lunch and wait for them to call.

So lunch was had.  As soon as our food arrived the GI's office called and asked if we could be there ten minutes later.  Did I mention this is in Dallas?  So we sped to the office.

And we missed the GI by ten minutes. 

The office said our GI as well as an Ostomy nurse would be calling us. 

They never did.

Matthew had a rough weekend.  He spent the majority of the time screaming in pain.  He threw up.  He was uncomfortable.  He couldn't sleep. By 3:00 on Sunday morning, fever hit.  We called the on-call GI.  They suggested we take Matthew in to the nearest emergency room. 

We did.  We were admitted.

A diagnosis of dehydration, stomach bug, and double pneumonia landed us in the hospital until Friday morning.  When Matthew's blood work was done on Tuesday his GGT (gallbladder and liver enzyme) was elevated.  The doctor recommended an ultrasound. 

The ultrasound was clear.  So we waited it out for a week with iv fluid and antibiotics.  On Thursday more blood work was done.  On Friday morning, the doctor told us we could be discharged on the condition that we saw our GI the following Monday.  Matthew's GGT was still elevated, and it needed to be followed. 

Within minutes of receiving the news that we could go home, Matthew vomited blood.  This was the first time.  The hospital nurse assured us it was due to his throat being sore, and we traveled home...cautiously

The blood in his vomit continued to happen on Friday.  By that evening I was on the phone with the on call doctor for our pediatrician.

And Saturday morning we traveled again.  We spent the majority of that day with our pediatrician.  Blood work was done.  An abdominal x ray was preformed. 

Matthew's GGT had almost doubled.  His xray looked clear, so our pediatrician sent us home knowing that he had called our GI.  We anxiously awaited the news on whether we would be heading to Dallas before the end of the weekend.  By that evening I called the on call for our pediatrician again just to check.

And wouldn't you know....the GI never called our doctor back either.

So Monday we traveled to Dallas.  We packed bags and made arrangements, just in case.

We had been in the waiting room mere minutes when Matthew threw up again.  This time it contained more blood and a greenish looking foam.  (Sorry TMI)

Our near naked little guy was a champ.  He smiled at the doctor.  He seemed to be in a fairly decent mood even after crying the two hours to the hospital.

The GI reviewed our story.  She reviewed his labs.  She checked him over.

She sent us home!

She is concerned about his GGT levels.  We are traveling once again next Monday.  Once there, we will draw more labs.  If his GGT is still elevated or has gone up even more a hospital stay with follow.  They will then do a scope of some kind and a possible hydascan. 

For those of you who are familiar with GGTs here are Matthew's numbers:

A normal range is 15-85
On Thursday Matthew's GGT was 282
On Saturday it was almost 500

During this chaos, very scary words have come up. 

Never in my life have I hoped and prayed that Matthew would simply need his gallbladder removed. 

Some of the scarier possibilities are liver, pancreas, even the C word.

And I somehow found myself living out my absolute worst nightmare.

It saddens me to think this is somehow related to Matthew's special needs.  Had a "typically developing" child gone in with the same symptoms they surely would have been both admitted and treated.  Many things get swept underneath the proverbial "special needs" rug.  It is sick.  It is twisted.

It is wrong.

So please keep us in your prayers as we slowly trudge on until next Monday.  We are hoping we can get a blood draw done this week through our nursing agency to at least see the progress. 

But until then, my heart just breaks for my boy.

And yet, he is still my Super Hero!


  1. My heart hurts reading this post. I cannot believe you had so many problems with being put off and not getting calls. You haven't seen anything until you've angered a SN mom! Go mama bear! I will be thing of you guys and praying for health and for answers. Holding out hope for something that can be addressed quickly.

  2. Sending prayers your way ! Hugs all around.