Update: 11/25/2015 - Evolution of the Rainbow Scar

Update: 11/25/2015

Driving with Brodie to Main Campus on Monday this song came on the radio and at first it got my fingers snapping, hands clapping, then my foot started tapping… This is like my theme song…. “Good to be Alive” by Andy Grammar – So have y’all heard this song? It is infectious, happy, joyous and I love it. if you haven’t heard it google it right now and let it play – be warned you must be able to jam a little when you hear it…

Literally I walked into the first appointment by shuffling, scooting and maybe even toe tapping to the rhythm that was just laid down on my commute in by Andy Grammar:

“Feels good to be alive right about now
Good, good, good, good to be alive right about now
Good, good, good, good to be alive right about now
Hallelujah, let that bass line move ya, say hey
And it's good to be alive right about now”

Yes sir… It is good to be alive right about now.

On our way into see our favorite phlebotomist we pass the PICU and the doors are open and I get a shot in the long hallway with glass windows and rooms on either side…

There is a round up of PICU teams outside a room updating and counseling on condition of their patients. I see parents who are scared, tired, aching and suffering from the unknown future, pacing and walking in and out for an update with family or a quick minute to grab a bite to eat. I am stopped in my tracks having a flashback of all of these things that I painfully know too well.

Slowly the doors shut and I am standing there reflecting on how far we have come in the past 6 weeks – really the past 11 weeks.

11 weeks ago today we were in the PICU feeling overwhelmed, confused, shocked and in disbelief about how a Pediatrician appointment could turn into a nightmare and ultimately a diagnosis that would change the rest of our lives.

As I was there I prayed for the families and children that were in there. I prayed for the amazing PICU staff and team who endlessly care for the children and families. I sent all the good vibes I could muster in that moment. My intentions for them that one day they would be able to take peace and sheer joy in the song I was just humming and be able to one day feel the gratitude, thankfulness, relief and amazement of the gift of life - so they too could shout in their car like I was moments ago “Good, good, good, good to be alive right about now”… Then I took a deep breath, composed myself and we continued on our way.

Big John was ready and waiting for us – we missed HIM (not what was about to happen – HA)! It had been an entire week since we had seen him – WOO WOO! We went back to the room and I am not kidding you – he set a world record – literally we were picked and drawn in less than 45 seconds – I should start timing this stuff!

This man is so special – and so kind. He just cares so much about what he does. Brodie even smiled at him before and after – just for good measure. I told him how amazing he was and truly how special he is and that we are thankful for him every day. Every day. He smiled and as always reminds me that he will always give Brodie his best. Yes, John – you do. Every. Time.

We went down and I got my Starbucks fuel – I ran into some friendly faces in line – which is always fun when you can have some adult conversation… And then I ran into our hero – Dr. Hashimoto (Brodie’s Surgeon) – who saw me from the hallway and came in to say hello.

I probably scared the crap out of him when I bear-hugged him and told him how thankful we are for him and how things are progressing. His eyes went to Brodie in the stroller and lit up as he saw Brodie’s huge saucer eyes staring right back. It was a moment between a surgeon and patient to celebrate – that at this moment – right now. Life is good.

We chatted about Brodie and the recent News story with WKYC – and again me letting him know how amazing he was and how thankful we are for him and his talents. And then he was off – to surgery – AKA saving someone else’s life. Ya know – no big deal - Just another day on the job. Human Hero.

After I got my fuel we made our way down to see another regular visit – Ultrasound. Adrienne took care of us today and I think Brodie got some of my toe-tapping spirit and he wiggled and waggled the whole time probably singing “Good, good, good, good to be alive right about now” – so Adrienne and I embraced the wiggliness of my nugget and occasionally when she needed a good image I fed him a bottle and he calmed down.

Great news on the mass (there was an unresolved pool of fluid that has been reducing itself in size that we have been monitoring) – it still looks like it is resolving itself.

As Mr. Grammar says in our theme song “Hallelujah, let that bass line move ya, say hey and it's good to be alive right about now...” Hallelujah is right.

Next up lunch - Donna (the live liver transplant coordinator & my nurse) came and visited us and watched Brodie literally inhale – INHALE peas – it was hilarious please look at his picture – he literally was trying to steal the bowl from me I could not feed him fast enough. This little guy has been eating like a little piglet. My friend Buket also came to eat with me.

We had our final appointment with Dr. Krishnan and our Nurse Practitioner Cathy Tichy – Brodie was perplexed and suspicious but eventually smiles and turned on the charm as he realized that there was nothing “major” that was going to happen.

Everything looks great. Liver levels, prograf levels, weight – he is at 18# 5oz – incision looks amazing. Everything is just great.

Thank God.

Dr. Krishnan and I started talking about the very beginning of this journey – you see he was one of the Drs. Who worked around the clock when we first came in to diagnose Brodie. He is the one who delivered us the news that it was Biliary Atresia that we were dealing with and surgery would confirm his suspicion. That was 11 weeks ago. 11.

11 Weeks ago we were admitted to the PICU because Brodie’s INR levels were a 9+ and there was fear that he might bleed out on his brain and now he has a brand new liver and is demolishing peas, carrots, green beans and any other soft baby food we put in front of him. He is thriving.

And here we are at Thanksgiving. One of my personal favorite holidays. You see this holiday always makes me reflect on my life – it always has. It is the one holiday where I allow myself to actually stop and think about LIVING in the moment – where am I in life? What am I thankful for? What can I do for others? Where and What I need to change to get back in re-alignment with where and who I want to be.

There are always these big scenarios that I build up about how I am going to move mountains and give big. Then I have to remind myself I do not need to change the world in a second. There are simple ways to give and spread human compassion and kindness.

There is always someone who needs more love. There is always someone who needs to feel like they belong. There is always someone who is hurting and needs help. There is always someone who needs a hug and be told it is going to be ok. There is always someone who needs to know you are there for them. There is always someone who is under-appreciated in our life that we can tell how much they mean to us.

Who can you impact this Thanksgiving?

All it takes is a text, email, call, message, hug, handshake, smile, friendly wave to make it happen for one.

In today’s world we can do that so simply – reach out to someone.

I am overwhelmed in the past 11 weeks with the amount of people that have impacted us. There is no way that I can communicate the overwhelming gratitude and amazement we have for modern medicine. There is no way that I can let every single person know how much they have meant to us. There is no way I can find and reach back out to everyone we have interacted with over the past 11 weeks. To tell everyone what they have meant to us. But I can try – one person at a time. One thank you at a time. One bear hug at a time. One smile at a time.

My gratitude this year is very simple. It lays within one-pint-sized-rainbow-scar-wearing-6-month-old-warrior and one-ferocious-sparkly-fierce-spirited-threenager and one amazing resilient partner in crime husband. This little tribe I have that I am so thankful for as we navigate through this so called life.

Just thankful and living in the present.

“Sometimes you gotta get scars to get what you deserve
I kept moving on and now I'm moving up
Damn, I'm feeling blessed with all this love”

Still jamming to the beat of my song...

Happy Thanksgiving Brodie’s Good Vibe Tribe - we are so very thankful for you.

#‎brodiesgoodvibetribe #‎sliverofliver #‎tiguetough #‎thegoodstuff