Memories

Over the past week Olivia's G-tube site has been red and swollen.  Since yesterday it became considerably worse, draining, swollen, red, and she would SCREAM when I tried to clean it.  Soooo off we went to Boston for a 1 PM appointment with the GI clinic.  Turns out Olivia has a little bit of an infection, which is what I suspected, but of course, my thoughts on the drive in were of all sorts of things that could possibly go wrong.    One bad experience and you are scarred for life, and that brings me to blog about memories.  Its amazing what can trigger memories.    For example, there is a huge sculpture type toy that makes a clicking noise as a ball drops through it in the main lobby of Children's Hospital.  The sound of that clicking noise makes me feel nauseous.  Now, why on Earth would a toy make me nauseous?  Because I will never forget, August 23rd 2010, when I walked back into the hospital with 3 bags, and my diaper bag and purse and not being able to get through security because I wasn't issued a badge yet.  I could hear the "click, click, click"  as I struggled to find my license to prove that yes, my daughter was just admitted and was probably hysterical that I wasn't with her yet.   And when I finally did get up to her room, she had her head on my mother in law's shoulder and a newly placed NG tube in her nose and I just held her and cried saying "I'm so sorry" as if it was my fault.  The poor girl was starving.  They started the tube at 1 oz every HOUR for 24 hours. In the meantime she had been shut off from any other feeding besides pureed foods.  I just cried and cried telling her I was so sorry.  Thank God she will never have memory of such heartache.    So, each and every time I go into Children's Hospital, the sound of the click, click, click, mixed with the smell of the baked goods from Au Bon Pain, and I just want to throw up.

And on the topic of smells....Children's Hospital uses Pampers diapers.  I usually buy Luvs or even Target brand.   For Olivia's birthday, my mother in law bought Olivia a big box of Pampers (among other things)  as soon as I put the first one on her, the whole experience came back to me yet AGAIN!  Just the smell of the diaper. And I could smell it all day, with each diaper change.  A very
 light scent that no one else could probably notice, but to me, it was making me crazy.  Thankfully, Ive adjusted to it, and I'm fine now. Unlike the sounds.

August 23rd, 2010.  Quite possibly the scariest day of my life.  Twenty-eight years and there had never been a time I had ever felt so helpless and scared.   I'm a strong person, I can get through things, and point proven, I did.  But I'll admit it, I have never been more scared in my life.    I can't even imagine what it would have been like if I wasn't strong!  I guess the saying is true, God never gives you more than you can handle. 

Update and a Vent!

Tuesday we met with Dr. Rehbar, the very well known otolaryngologist who will be permorming Olivia's laryngeal cleft repair in June. It has been decided that it is best to fix the cleft sooner than later. Especially seeing she seems thirsty all the time.  The doctor had previously said that he felt repairing the cleft would not help Olivia's condition when he saw it in the operating room in September.  Dr Rehbar said that the only other reason for Olivia's aspiration would be a neurological disorder and where she is totally developmentally normal, he feels the cleft has to be the reason she aspirates.

All I want is for my daughter to be OK. To be able to drink a cup of water or juice. To be able to eat a popsicle or a slice of watermelon or a bowl of soup when she has a cold.  Whatever it takes to do it, I'm on board.

Now here is my pet peeve.  Olivia has a RARE congenital disease. So no, you don't know "someone" who had that.  you don't know what the surgery is like.  By the way, its 3 hours in the OR under anesthesia, while the doctor performs the whole thing robotically and then a night in Intensive Care.  Anyone with kids can relate to the scariness of the words anesthesia and intensive care.    I appreciate so much everyone who has been there for me every step of the way, even if only through a simple facebook comment or message...it truly means the world to me.  And then there is the "she will be fine".  Can you say with certainty that my daughter will be fine? And the people who are saying it, most of them haven't even met her.  Now, if you know Olivia and you know the whole story a "she will be fine" is OK.  But if you have never met her, have NO IDEA what a laryngeal cleft or it's repair is, do not say that she will "be fine". Its condescending at best. 

My heart goes out to every parent who has ever had the displeasure of sitting in the operating room waitng area while their child is in surgery.  It is a truly heart wrenching experience that cannot be described or understood until you have felt it.   What is even worse is trip after trip after trip to doctor upon doctor, procedure upon procedure just praying at each visit this will finally be the one that they figure her out and FIX HER.  I know that I am actually one of the lucky ones. I walk into Children's Hospital and I thank GOD I have Olivia.  Some are not so lucky. 

I know that Olivia is in the best hospital in the country.  They will fix her eventually.  Its just been a very long road, but we are up for the challenge.