Wednesday, November 2, 2011

Elissa-Her Trip To The ENT

This wasn't the post I had planned tonight.  But it's an update I want to record.

If you've been reading my blog from the beginning, you know that Bailey went into respiratory distress at 4 months of age (after I had said over and over again that something was wrong and was sort of ignored) and what followed was a roller coaster of hospital stays, tests, trips to the OR, and eventually major surgery on her airway.  She was diagnosed with a condition called subglotic stenosis, which mean a narrowing of her airway below the glottis, in her airway.  Her surgery took place at 5 months old and her ENT, Dr. Carron, ranks right up top with God and my grandfather.  I trust the man sooo much. I trust his decisions and I obviously trust him with the lives of my children.  He followed Bailey from May 2009 until February 2011.  In February, we had just gotten the news of the twins when Bailey was released from his care with an airway that had gone from being 87% restricted to an airway of being 13% restricted.  We asked Dr. Carron what the thought the possibilities were of a repeat of the happening with one of the twins.  His reply, "not a chance."

Fast forward to August, 2011, after the girls were born.  They stayed those 15 days in the NICU and during that time, I noticed Elissa made a very odd, loud sound while taking a bottle and sucking. I was told that she was just enjoying herself.  I honestly never gave it another thought.

So, when I had the girls at the pediatrician for the 2 month check-up, I was giving Elissa a bottle.  The doctor noticed the noise and asked me if she always did that.  I explained what the NICU told me and she decided she didn't like the sounds of it. When the results of the upper GI study came back fine, she referred us on the ENT to rule out several different conditions that could cause the noise, which happened to be strider. 

Today, we saw Dr. Carron, the ENT.  He was a bit baffled to say the least. I joked with him that he told us this would not happen.  He just sort of shook his head like this is really very strange.  As soon as he listened to Elissa breathe, he made the comment that he felt like it was going to be subglotic stenosis.  Tears immediately sprang to my eyes, but I was sort back in the corner with Ellie and quickly got hold of myself.  But I really just wanted to run out the door.  

the ventilator in a medically induced comma??  I do, and it wasn't pleasant. It was frightening.  I can't imagine going through that again, period, much less with 2 more children at home.  

The plan of action is to go the operating room and have Elissa sedated to do a more in depth scope to really asses the situation.  And then we'll go from there.  They were able to get us into the OR this Friday.  Thank God my mom was on her way.  

So, that's all I know for now.  This sweet girl will have a sedated scope on Friday and if there is some type of intervention that needs to happen, it will more than likely happen at this time.  I'm not a happy camper right now. I just love all of my girls so much and can't stand the thought of them suffering or uncomfortable.  And this go around, I know what to dread.  Please say a prayer for us as we go through this and pray that it's more or less a condition that we will have to just watch and not one that requires immediate surgery.  Dr. Carron did say that she has a lot of swelling and inflammation  due to reflux and it could just be severe reflux causing strider.   So we'll see.  Pray for my other girls who might have to be away from us.  Pray for my mom and Sid's mom, who will more than likely be the ones to care for my other two.  And of course Sid, who continues to be the level headed one of the bunch.  I'm really just stunned. I wasn't prepared for this and to be honest, I don't think that's what she has.  There are alot of things that Bailey had that Elissa doesn't have.  The only thing they had/have in common is the reflux and strider.  

Elissa Marie Whitehead, we love you and we promise to do all we can to keep you healthy and make decisions that only benefit you and not hurt you.  It took 35 years for God to bless me and make me your Mom, and now that I've had you for almost 12 whole weeks, I can't imagine life without you.  You will grow big and strong one day, like big sister Bailey, and not need me as much as you do now.  But we love you soooo much and we want you well as soon as possible sweet girl!

Ok, Ok!  See her gown??? I heart it so much!!! Look What Gram Made, Gram can be found on face book, did Bailey's big sister shirt and made her guitar outfit.  I saw these gowns on Etsy, but they were really expensive.  Since I have to buy times 2, I just couldn't do it.  I told Gram what I wanted and ta da....she came up with those gowns and monogrammed their names on them-for a fraction of the price of what others are selling them for.  She has some really cute Christmas tees I need to pick out and order.  And what about their cute pumpkin outfits they wore from Halloween?  I got those from a place out of Birmingham.  Taylor, the owner, went to high school with my sister Maggie and she has this online store called Spruce Boutique.  She is on face book as well.  Be looking for a fun give away just in time for Christmas from Taylor and Spruce Boutique.  

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