Wednesday, June 16, 2010

Soooo upset...

Well, Sam was supposed to have tubes tomorrow.  We went for pre-op today, and his anesthesiologist chickened out of the surgery bc she was scared of Sam's heart defect. 

I got Sam to the ENT center for Pre-op at 1.  We waited for 45 min.  During that time, Sam and I had an experience I'm sure most mommas have at some point.  He made a big poo diaper...and momma had no fresh diaper on hand.  I improvised...cleaned up Sam and his diaper as much as I could and reused it.  Totally gross, I know, but he couldn't sit it a totally dirty diaper!

After 45 min they brought us back and spent all of 5 minutes asking us basic questions.  I made sure the doctor knew I was worried Sam was coming down with another ear infection. Sam has gotten a runny nose, and then this morning woke up with a croupy cough.  He assured me they could still do the surgery with an ear infection.  BUT he didn't even look in his ears.  Oh well, I thought, move on.

After we finished there we went straight to the Medical Center's Surgery Center.  Sam couldn't have the procedure at the ENT center bc of his heart.  They just wanted him in a more acute care location incase he needed it.  We waited in the Surgery Center for an hour.  For the most part Sam was good.  He did gag on a french fry and throw up all over himself, myself, and the floor.  So if you're keeping track, we are on our 3rd hour of doctors offices, we have a had a big poo, and a nice juicy puke.

We finally got called back and once again, the whole process lasted about 5 min.  They just asked us basic questions.  The nurse was super nice, and wanted to know all about Sam's heart, and I totally indulged her.  Sam, stressed out from the long waits and yet another small doctors exam room, fell asleep in my arms while the nurse and I talked...he hasn't fallen asleep in my arms since he was an infant.

Just before we were finished, I asked when we would get to talk to the anesthesiologist.  I only asked because when our CARDIOLOGIST CLEARED US FOR SURGERY (an important part of this story), he told us to be sure the anesthesiologist was clear on Sam's condition.  The nurse called and brought the head of anesthesiology to talk to us.

RIGHT AWAY, the anesthesi looked totally freaked out when she read Sam's diagnosis.  She immediately started back pedaling, saying that we couldn't do the tubes procedure at the Medial center.  She was saying that if something went wrong with Sam and anesthesia, the Med didn't have the know how to save him due to his complex heart.  She said the best thing to do is cancel surgery and start this whole process again with a doctor at Egleston in Atlanta.

I was BAFFLED.  1) The pediatrician cleared him for this 2) The cardiologist cleared him for this 3) the ENT cleared him for this 4) we KNOW heart kids who have had tubes done at the Med.  WTF!!! 

Trust me, if the HEAD of anesthesi was too nervous to touch Sam, then  I don't want Sam anywhere NEAR the Med.  BUT I so upset we aren't doing this surgery tomorrow.  He's suffered enough with these ears.  On top of that, I feel like the ears are the key to him walking and talking better.  From our checkbook and calendar's perspective, Chris and I have taken off MULTIPLE days to get Sam to this point with the ENT, not to mention multiple co-pays.  Now we are starting all over. 

The Anesthesiologist told us we need to do this surgery at Egleston, where they have a cardiac anesthesiology team.  That's all fine and dandy, but that requires more days off from work and more co-pays and MORE TIME for Sam to continue to suffer with ear infections, poor speech, and poor walking.  I'm so so sick of the medical center.  After our bad experience the night he almost died and now this,  I have pretty much decided we need to just move to Atlanta and buy a house across the street from Egleston.

In a way, that is a joke.  But in a way, it's not.  In reality, we are now an hour or more away from the only hospital who can help Sam with ANYTHING, not just his heart.  Think about what that means for the future.  Chris and I will never be able to just move anywhere we want...we will have to stay near a pediatric cardiac center.  Sam will never just be able to move anywhere.  We're already limited in our travels due to altitude concerns.  I don't want Sam to be held down by this stupid heart thing but everywhere we turn, we hit walls.

So the next step is to get an ENT at Egleston and start this whole process all over again.  Even that will be an act of congress, because our ENT in Macon didn't know anyone at Egleston to refer us to.  To add insult to injury, we had to pay over 600$ today in 'downpayment' for Sam's tubes.  After they officially cancelled the procedure, we were told they couldn't cancel the payment...that we would have to wait for 24 hours until we could put in a request for a refund. 

And after all of this, we are still left with a little boy who is probably coming down with an ear infection.  I got in appointment with the pediatrician tomorrow.  Naturally he would get sick right before we leave town...

The two highlights of the day: Sam falling asleep on my shoulder, and my amazingly good couponing week at publix (spent $40, saved $95).