My daughter is a ROCK STAR!! (REALLY!)

Monday, June 6th, Olivia had her laryngeal cleft repair surgery.  As I have said, this is major surgery.  I was a nervous wreck for months about it, literally.  I found the BEST doctor in the entire WORLD for her.  Really. I'm not exaggerating.  Dr. Rahbar was the first in the entire world to figure out how to repair laryngeal clefts robotically as opposed to an incision right in her throat that would be a scar for life.  Very few doctors perform this procedure, and those that do, learned from Dr. Rahbar.  He is absolutely AMAZING and I cannot say enough how thankful I am for him.  I spent HOURS researching him and his work.  It was astounding what this man has done.  How lucky am I that the best doctor in the world for my daughters rare condition is 30 miles away?

So off we went to Children's Hospital Boston, which truly is the GREATEST hospital ON EARTH.   Everyone there treats you like you are the only patient/parent there.  There are hundreds of sick children around and they cater to you like you are the only one.  It is truly heartwarming.    We waited for what seemed like an eternity, and finally it was time for Olivia to go up to the OR.  Now of course, Olivia did not want to go alone with the anesthesiologist as she had in prior surgeries.  My husband offered to go with her, but I have gone this far, I wasn't going to be weak now.  So, I had to get into scrubs and go with her.  And let me tell you, helping anesthetize your own child is torture.  They said "you are going to hear her breathe funny and her eyes are going to roll back in her head".  But her eyes were WIDE open and they said "She's out".  Equally creepy.  So I gave my precious baby girl a kiss and left the cleanest, brightest, most high tech operating room I've ever seen in my life. When I came out, my husband said he was surprised how well I "held it together".  What he doesn't realize is that I've already lost it before.  I've spent days crying in the hospital. I've wondered why my daughter. I've cried while I had to hold my baby down and insert and NG tube.  This wasn't easy, but I've come a long way since last year.  

About 2 hours Post Op

Now, the waiting.  Never easy, but this time was especially hard because the doctor said the procedure would last  anywhere from 1.5 hours to 3 hours.  He came out in about 2 hours and said the procedure not only went as planned, but the broncoscopy they also performed showed a normal airway.  (Previously her airway had been abnormal, with what her pulmonologist dubbed as the "worst case of aspiration he had ever seen in his career"). She also had new ear tubes placed, as the ones she got in September were now non-functioning.  (yet this was VERY minor compared to what her primary surgery was(.  Olivia was transferred to the Intensive Care Unit as a standard precaution because she had major surgery on her airway.  When we initially saw her she was very cranky and upset.  Yet after a short nap, she was already all smiles again!!    By 6 hours post op, she was  just about back to her normal self!  

ICU was undoubtedly the scariest place I've been inside at Children's.  This is where they put the really, really, sick kids. The doors are all locked, you can't get in without a nurse.  There is no bathrooms in the room or even on the unlocked side of the doors to the unit.  No cell phones are allowed.  The rooms all have windows into the next room so that the nurses can watch both of their patients at the same time.  There is so much equipment in the room  that from one angle you can't even see where your child is.  Scary.  And there is my precious daughter, in one of these beds, with wires all over her body monitoring her heart, breathing and blood pressure.  

Olivia had me  up most of the night, but by morning she was back to her normal self completely.  The nurse had to ask a doctor for special permission to just let her walk around the room because I couldn't keep her still.  And then, Olivia was OFF.  There was a emergency in a room a few doors down and all available nurses and doctors were paged.  People started running past our room to get to the emergency.  Well, wouldn't you know, Olivia decided she would have to join in, and started bolting down the hall behind them.  Thankfully I grabbed her in time, but one doctor later said "I'd like to thank your daughter for trying to help out with that situation".  What kind of kid in ICU is running around?  What kind of kid is eating Goldfish crackers for breakfast after having surgery on their airway?  Waving bye bye to all the nurses as she gets transported to her new room?  The kind of kid who is unphased by any "bump in the road".  The kind of kid who grows up to be a STRONG woman.  Hmmm.  I wonder where she gets it?

Running the halls

So here we are back home. Olivia is acting as if nothing ever happened.  We won't know if the surgery was as success for about 4 to 6 weeks, but the doctor is optimistic.   Do I wish Olivia was never born with this condition? Absolutely.  Am I thankful for everything we have on our side?  More than words could ever describe.  If Olivia is anything like me, and I know she is, she will fight until she wins.  I already see it in her.