Wow 5 days have gone by since Lilly's surgery. I can hardly believe it!

But before I talk about anything else I want to say that she is doing great! The surgery was successful and physically and mentally she is adjusting perfectly.

I think that one of the thing that has affected us the most is how our community and family have come together to support us. Lilly and I live a relatively quiet life and I have never "put us out there" to be criticized or judged before now, so to be greeted with open arms from our community and extended family has been as life changing as her surgery has been.

Thank you from the bottom of our hearts!

OK so now, what happened ~ On Thursday at about 7:30am we changed the original plan from having a spinal block to using an epidural. Why? Because a spinal block would have only lasted about 8 hours and the epidural could be left in place for pain management for up to 2 days. Lilly has a history to difficulty with pain and coming out of an anesthesia so we chose the epidural.
Her surgery took about 4 1/2 hours. Can I tell you that 4 1/2 hour of your daughter being in surgery stands for about 4 1/2 years in mom time! At any rate, we were graciously greeted by her surgeon afterwards who told us that "she was money" which I loved! Such a great use of the phrase! He went on to say that the surgery had gone exactly as he had expected and that she would be in the ICU for 2 days. She had drain tubes in both legs and due to the epidural, she had a catheter and IV  lines in both arms for additional medications.

The first 24 hours were rough. Lilly woke up thrashing around, pulled the tubes out of her legs and then because they were pushing meds so fast into her tiny veins, she blew the IV out too!

I decided early on that I didn't want to be alone in the ICU with her so my Dad, sister and Mom did shifts with me through the night. Not to anyone's surprise, Papa was the only one she really wanted so he ended up doing the next 2 days with me in the ICU room ~ Thank God for Papa!~

Our nurses were amazing and are truly angels here on earth. They amazed me time and time again with their endless compassion and ability to see through a comment or situation and into what we really meant or needed at that moment. Every single time Lilly said that she wanted something to eat or drink, that exact thing would magically appear at her bedside, from quesadillas to chicken strips, specific movies to toys; it was awesome!  The level of care we received from Shriners what truly life changing and I only wish I could explain it to all of you.

The beginning of Day 2 ~ Valentines Day

Everything from the knees down is gone now.
We were all very concerned about how she might react when she was clear enough to realize this. A lot of time had been spent talking and preparing her for it but  . . . she's 6 and she might not have understood the reality of what she was going to have to face.
We were all concerned that we might react wrong too, but the truth is, Lilly looked at her legs and she was happy. She was proud. She seemed relieved. She wanted to show them to all of us. It was a truly enlightening moment that I will never forget. "Touch 'em" she would say, they are light now! She immediately started lifting them and moving them up and down. OMG, she gets it! She understood all the work we did to prepare her! She's not mad, she isn't blaming any of us, she is happy.
Most of day 2 Lilly slept so I was nominated to hand out Valentines to the staff. Little did I know that today would be monumental for us too. First we were greeted by the Queen of Hearts! Truly ~ we were greeted by about 10 women in tiara's representing the Queen of Hearts for Valentines Day!

 Part of the magic of Shriners is that they are able to mix the old and young along with touches of whimsy and play to create this place of healing and love without making it intrusive. It was a much needed break from all of the seriousness and worry too.

So after being kissed by the Queen, I was sitting in the clinic waiting to hand out Lilly's Valentines when I realized that all the kids in the room had prosthetics. This was Lilly's future. I could see her here, walking, playing with the other kids. My heart was filled with hope and joy for her and her future. At that moment I knew she would be OK, we would all be OK.

Day 3 ~ Saturday

We are getting out of the ICU! Don't get me wrong, the care was outstanding but so was the boredom once she starting feeling stronger!

So with the epidural out, catheter out and IV lines unattached, downstairs we go!

Again, fabulous nurses and staff! Lilly decided at that point that her wheelchair was her best bet for freedom so around and around we go, down every hallway in the place.

Lilly has virtually no pain at this point and is only receiving 1/4 tab of Oxycodon every 4 hours.

Day 4

WE ARE GOING HOME!

Seems unbelievable but after only 4 days we are on our way home today.

 Lilly and my life has changed forever and I don't think that we could have done it without you.

 In the past 4 days alone we have received hundreds of phone calls, cards, texts and face to face moments with all of you and some complete strangers. You have touch our lives forever, we needed you and you were there for us!

THANK YOU ALL

I will talk to you again soon.