I'm sorry? Can you repeat that? g- what?

Most of you don't know the details of something I alluded to after our orphanage visit.  Little Buddy's birth note listed the phrase "Diagnosis g6pd".  I asked our guide what that meant and he said he thought it was his airway condition.  Considering I know nothing about Chinese medicine and the fact that it ended in PD (in my nurse brain pd = Pulmonary Disorder) I accepted what he said as truth.  Unfortunately, that night I consulted Dr. Google and discovered he was wrong.  g6pdd is an acronym for a genetic disorder called Glucose-6-phosphate dehydrogenase deficiency.  It is a genetic enzyme deficiency which can cause hemolytic anemic (a blood disorder).  At the time we had no idea if he truly had this condition but if so it might explain a lot.   

Fast forward...

Friday, August 3, 2012... 

We had hope the birth note listing g6pdd wasn't accurate.  The test had to be sent to a specialized lab so the results came back this afternoon.  Unfortunately, he does, indeed, have g6pd deficiency.  According to Dr. B his level is very low so off to hematology we go.  It was already on our list of consults because of other abnormal lab work but now it moves quickly up the list.

Obviously the Lord knew all of this but now we have to try to sort it all out.  In the big picture it could be worse but it would have been nice to have this information beforehand.  We gave him medication he should not have taken (which may or may not have caused his seizures).  We gave him food and milk he can't eat or drink.  WHY DID THE ORPHANAGE KEEP THIS FROM US????  They knew the information but chose to withhold the information from us.   

It is not very common here in the US but is the most common inherited enzyme deficiency worldwide.  With lots of research I am finding the main change will be the way we eat.  Removing MANY foods from our diet.  Limiting certain vitamins and minerals because he can't process them.  A LONG list of medications he can never ingest.  All of these things can be triggers that send him into a hemolytic crisis.  We do not feel it is fair to make him eat completely different than we do nor am I going to be his short order cook.  Thus the reason this will need to be a change for our entire family.  Quite frankly, we are OVERWHELMED but we will figure it out one day at a time.

The Chief and I?  We're just sad... angry... humbled... frustrated... overwhelmed... yet thankful.  I honestly don't know where to begin.  I know once we figure it out it won't be so overwhelming but right now that's where we are.  Yes, he will live a long life as long as we are diligent about avoiding/removing the triggers from his body.  He will require diligent eyes to keep him safe.  He may require hospitalizations and blood transfusions along the way.  In the big picture this feels like big stuff but eventually it will be small potatoes.  We know that.   Yes, we are overwhelmed but we are still thankful we said yes.  We are even more thankful we said yes on those very scary days in China.  Now more than ever I know he NEEDED to get out of there and receive proper care.  Now he has a Mommy and Daddy who will fight for him instead of ignore what he needs.  He didn't have that three weeks ago.  I guess we'll just become his very granola Mommy and Daddy who are nazi-ish about everything he puts in his mouth.  I guess it could be worst, right?

To those of you who found out this information via Facebook... I am SO sorry!  We would have much rather you heard it from us but there's nothing we can do about it now.  There are always multiple sides to every story.  One you tell your inner circle while you process an enormous life change and one you present to the world after you figure it all out.  Then there's this thing called Facebook that can, unbeknownst to you, tell the world before you are ready.  As many of my friends in real life already know, I posted in what I thought was a CLOSED group about something I wasn't ready to tell the world.  However, I was actually posting in an OPEN group.  8/  So, FB decided it was OK to share my posts in the newsfeeds of 480+ of my "closest" FB friends.  Lovely...

Fast forward until today...

Friday, August 17, 2012... 

Today we saw the hematologist.  We are now awaiting insurance approval before we can determine Little Buddy's g6pdd variant.  Once we know the variant we can learn the characteristics of how it will most likely effect him and to what severity.  I honestly don't feel we know much more than we did yesterday.  I asked many questions.  Some she knew the answers to and some she did not.  We have discovered so much discrepancy between physicians about this disorder we don't know what to believe.  Over the next few weeks we will be searching for more information.  Pray for discernment as we make changes for our Little Buddy.  All the kids are taking it in stride...thankfully!  Now Momma and Daddy need to adjust to the new normal...

One Month: August Update...

As of today we've been a family of six for one month.  Things are going really well overall but so much has transpired the Chief and I are still spinning out of orbit at times.  Since I am the one who documents the life and times of our family I need to write it all down.  This is going to be a REALLY long update.  Feel free to skip to the pictures if you get bored...

July 26,  2012...
Home Sweet Home!

July 30, 2012...
We arrived home on Thursday evening and saw Dr. B, our new pediatrician, first thing Monday morning.  The short version of our lengthy appointment was Little Buddy needed to see a Pediatric Neurologist ASAP.  We knew that was a given after the events of July 17th.  Thanks to my friend K he already had an appointment for Wednesday with Dr. S (the doctor Dr. B would have sent him to anyway).  Sometimes it is great to have connections.  :)  THANK YOU LORD and K! 

 August 1, 2012...
We saw Dr. S on Wednesday morning.  Liked him a lot.  He first started with the recommendation of medication immediately.  Of course I cringed and talked him out of it.  :)  I would like to have a little more proof of a true neurological issue before we put him on meds.  He agreed, a little reluctantly, but my PCCU nurse shined through and we came to a reasonable agreement.  The current wait for an EEG is 4-5 weeks which is the reason he wanted to start meds quickly.  The nurse came back and said, "Would you believe they had a cancellation for Monday at 1pm?"  My reply was "WHY YES I CAN!  It's for Little Buddy!"

We left Dr. S office and went back to Dr. B's office for lots of lab work.  The first set of labs came back that day.  The short version is his hematocrit and hemoglobin were a little on the lower side for his age but nothing too alarming.  His platelet count remains very high at nearly 800,000.  His lead level was normal. 

August 3, 2012...
To Be Continued...

August 6, 2012...
Monday at 1 pm we ventured to our local Children's Hospital for the EEG.  Little Buddy was a little unsure at first but overall he did REALLY well.  We should have the results by Thursday. 

August 9, 2012...
EEG results:  NORMAL!!!!  

August 16, 2012...
After the first night home Little Buddy has been sleeping pretty well thanks to a little help from our friends Mr. Benadryl and Miss Melatonin the first two weeks.  He is still waking up in the night off and on with what we call "the China cry".  It breaks my heart every time but I know it will get better with time.  The boys switched back within a few days.  It took me about three weeks to switch back completely which contributed to the insanity around here until we were all on the same time zone.  I thought I was going a little nutso.  Thank goodness the Ambien finally worked.  Outside the medical stuff this has been our biggest challenge so I'm glad it's behind us.  Jetlag STINKS! Overall everyone seems to be settling in well.  Mei Mei is a little jealous but nothing out of the ordinary for welcoming a new younger sibling.