Update: 03/03/2016 - Blood Clot Discovered

Update: 03/03/16 - Mama Bear has been unleashed. Over the past couple weeks I have been simmering and boiling and simmering and boiling as I have watched Brodie in disbelief that he has been thrown another variable in his quest for conquering and getting through this battle.

Leave my baby alone hurdles. Stop picking on him challenges. Get out of his way obstacles.

You will not get the best of this nine month warrior. And you obviously have not met his mother. Now you have just woken up Mama Bear and I am Mad.

Hasn’t this little warrior been through enough? I mean he has gone through more than what most people do in a lifetime.

By the time he is crawling/walking (not sure what is going to come first) he will be able to get through Cleveland Clinic Main Campus by himself. And I am pretty sure at this rate there is going to be a “Brodie Boom” of babies because of the baby fever he is giving all of the nurses there (sorry in advance)…

My emotional state could give Cedar Point Roller Coasters a run for their money. I have had to refrain from posting because I am sure you all would have questioned my sanity, here is a snapshot of my emotional yo-yo state – happy, scared, sad, hopeful, upset, confused, peaceful, annnnnd repeat.

Here is a short medical update:

Brodie has a blood clot in his portal vein.

We are administering Lovenox, which is a blood thinner – to prevent the clot from getting larger and other clots from forming.

This is in shot format – given twice a day – 12 hours apart – we give this into his chunky thighs. He screams, Harper gets upset, I have to harden my nerves, find my focus and go into nurse mode – cries and screams last for about 2-3 minutes and it is done. Bruises form and remain as proof.

How long do we have to give the shots? 3 – 12 Months. I tell myself everyday - Every shot down is one less to go. He won’t remember this. And for the next 3 – 12 months one of us will have to be home at 830A/P to make sure our warrior gets his shot on time.

The Blood Clot HAS TO RESOLVE ON ITS OWN. This does not happen quickly – there is nothing you can do medically to get a clot to go away.

We are monitoring the Blood Clot by Ultrasounds we just had one last week – it was the same as before. We have another one on Monday.

Because the portal vein is semi-blocked – Brodie’s spleen (which was already enlarged) is working overtime and absorbing platelets so his blood counts are incredibly wacky.

His platelet count was at random totally low 28K last week and should be between 150 – 200K (we had a fear last week he was having a bad response to Lovenox but the test revealed he was not THANK GOD).

Where does that leave us? 
Good Vibing, Praying and Hoping that blood clot to resolve on its own. Hoping Brodie’s little body responds and the vein walls absorb that clot and it goes back to functioning on its own.

What if this does not work?
Brodie will have to get a STINT put in his Portal Vein that will open up the vein walls for flow to go through around the clot. How? They go in through your neck, down with a scope and place it in the vein walls.

For some reason this has really challenged me personally.

Maybe it was because I could taste the normalcy of life coming back. 
Maybe it was because we were one appointment away from having to come down to the clinic 2 – 3 times a month. 
Maybe because Brodie was at peace with routines and never cried. 
Maybe it was because I felt Brodie had won. 
Maybe it is because I let myself believe we were there – we were right there. Right. There.

Anger is now fueling my hot pursuit.

You found the wrong Mama to mess with.

This will not bring us down.

We will defeat and get this body on track.

Agatha Christie said it best “A mother’s love for her child is like nothing else in the world. It knows no law, no pity, it dates all things and crushes down remorselessly all that stands in its path.” Boom. Straight up Agatha. This is my new motto.

We are in a hot pursuit for health. We are coming for ya. Blood Clot, Shots, Medicine and whatever else. Get. Out. Of. The. Way. We are strong and will crush what gets in our way.

Everyday we will do it through determination, teeth grinding through daily shots and medicine, enthusiastic milestone celebrations and seizing each day, focusing on the good.

So for right now this mama is fired up and maybe a little bit crazy … but hey – “it’s good to be alive right about now!”

PS Can you imagine my pep talks before his t-ball games I am ready for that too

XO-TT

#‎brodiesgoodvibetribe #‎sliverofliver #‎TIGUEtough

Update: 02/27/2016 - Luke's Liver Transplant

Brodie's Good Vibe Tribe asking for vibes, mojo, prayers and good intentions for the Morris Family - Baby Luke is getting his NEW LIVER... RIGHT NOW!!!!!! They just got a call! Please keep this family in your thoughts - strength for Baby Luke, bravery for the parents, skill for the surgeons, hope and understanding for the organ donors family and anything else I am leaving out! GO LUKE GO! Luke's Legendary Liver League OMG goosebumps and tears for this family! HAPPY NEW LIVER BIRTHDAY LUKE!!!!!!!!!!!

Update: 02/25/2016 - State of the Clinic Video

Today our family gets to share with you our journey with our little warrior Brodie - here is our story....

My heart pumps harder and my stomach flutters as this video created so beautifully through the eyes of MEDICINE and LOVE - with images and video from our past 9 months developed into this journey you all have embarked on with us.

My ask to you is to SHARE THIS STORY.

SHARE THIS STORY - EDUCATE others, INSPIRE good, GIVE BACK to those in medicine and BELIEVE that MIRACLES happen.

https://www.youtube.com/watch?v=4_OCPHCgH-A

You never know who might see this and who would GIFT LIFE forward - what if you saved a life just by sharing?

Yesterday was beautiful to share this moment with the world - but most importantly to have some of our care-taking team at Cleveland Clinic Children's get recognized for their incredible talents.

Tigue Tough and Cleveland Clinic Children's Proud - Transplants are amazing - and we LOVE OUR NEW LIVER!!!

XO - TT

#brodiesgoodvibetribe #sliverofliver #TIGUEtough #thegoodstuff

Special Thanks To: 
Cleveland Clinic for the video (Laura, Mike & Val <3 <3 <3)
Shannon Ahlstrand Photography for some great photography

Update: 02/24/2016 - State of the Clinic - Meeting Dr. Toby Cosgrove

Meeting of a lifetime: What happens when you are 9 months old and having the biggest meeting of your little life with Cleveland Clinic Children's and Cleveland Clinic President and CEO Dr. Toby Cosgrove?

Well you have a monster blowout that is an outfit changer on the way up and then become a perfect angel and then sleep it off. Cleveland Clinic featured our story in the State of the Clinic - Patient Story of 2015

So incredibly happy to share our journey and have our team be recognized for their tremendous miraculous work (we love them)!

Update: 02/21/2016 - Another BA Warrior - Luke's Legendary Liver League

02/21/2016


Brodie's Good Vibe Tribe this sweet little guy Luke is battling the same thing Brodie was - Biliary Atresia as you can see from the post his transplant will be coming up soon as his little body is mustering up as much fight as it can.

Please send them good vibes, add them to your prayers or simply just send a good thought their way - Luke's Legendary Liver League is where you can follow their story.

In the mean time please just give them some good juju, great mojo, a little love to help them know they are surrounded in this scary, hopeful, critical time for their little guy to get his NEW LIVER that he will just LOVE when he gets it - I know it!

#‎liverloveforluke #‎brodiesgoodvibetribe #‎sliverofliver

Update: 02/18/2016 - We are home

Update: 02/18/16 - We. Are. Home. Brodie hoped and wished and longingly looked down the hallway at the door ALL DAY and POOF - dreams do come true! Who needs DISNEY when you have Cleveland Clinic Children's- HA!

Our team. Our team. Can I tell you how our team went above and beyond today - there was a ton of tail-busting, running around like maniacs getting. it. done. - that needed to be completed to get us out today and we are SO SO thankful and grateful that they made this happen.

Because Brodie is so small (if you consider a 9 month old at 25 pounds of sweet buttery love small ;)) and the new medication (Lovenox aka the shots) we are on is typically not something common for babies to be prescribed so the dosage varies based on size, weight and how they absorb the medication.

Basically we found the right shot "dosage" by trial - finally on the 4th go (Each shot is 12 hours apart and labs ran 4 hours after) we had the MAGIC DOSAGE CONCOCTION to get him to the right level (Anti10A) in his blood. Which was our ticket out of there!!
As well as working to get this drug ordered, approved, released and delivered working with pharmacies AND insurance companies - OMG. Thank God for amazing professionals who know how to get it done! We are SO SO thankful - Tichy, Jim & MaryJoy!

We will be back at the Clinic on Wednesday for an ultrasound - looking at the blood clot and making sure it is not growing, getting labs with our vein whisperer, meeting with our team and evaluating where we are.

Until then it is life as normal - play hard, eat alot, tummy time, sitting time, furniture surf time, jump time, experiment with table food time, watch my sister time, love on my mommy and daddy time - ya know just baby stuff with meds and shots here and there...

So tonight we are in our own beds, feeling relieved and amazed that once again our warrior has hope and potential to FIGHT, DOMINATE and WIN at yet another challenge.

I am a Disney fan... I will always be... in Cinderella we learn "EVEN MIRACLES TAKE A LITTLE TIME" so in your journey take it day by day - hour by hour - minute by minute - don't expect it overnight...

LOVE
XO - TT

#‎brodiesgoodvibetribe #‎sliverofliver #‎TIGUEtough

Update: 02/17/2016 - Portal Vein Blockage

Update: 02/17/16 – Brodie has a blood clot in his portal vein going into his liver. We have been working with our Cleveland Clinic Children's Transplant & Liver teams to get our 9 month Warrior on track.

Bad News: This is very serious and could develop into some threatening conditions
Good News: We caught it early enough that there is still blood flow going through the vein around the clot so we are not at that place yet

Bad News: There is no treatment for the current blood clot
Good News: The blood clot will eventually eliminate itself into the vein walls

Bad News: The treatment is 2 shots a day (of Lovenox a blood thinner) – this will prevent the clot from getting larger OR other clots to form
Good News: At this point it will PREVENT us from having to do any INVASIVE surgeries

Great News: This has NOTHING to do with the FUNCTIONING OF HIS LIVER - that is still FABULOUS (WHOOP WHOOP – YESSSSS – Cha Ching!!!)

Questions you may have:

How is this caused? Anyone who goes through a major surgery is subject to blood clotting – in Brodie’s caes there could have been a teeny, tiny, eency-weency clot that had existed and has just progressively grown over the past month – this does not have to do with his liver functionality.

Does he have more clots? 
At this time there are none that have been detected.

How long will he have to be on Lovenox? 
We are not sure how long Brodie will have to be on the shots – it might be a great 1st Birthday present (3 months) for him to get off – time will tell.

How will it be monitored? 
We will do ultrasounds to watch the progression of the large blood clot.

What if this doesn’t work? 
We will evaluate that down the road but it would be potentially an invasive procedure.

How does this impact lifestyle?
It doesn’t. Brodie can still eat and be as physical as any other 9 month old. And if his round ole belly will let him hopefully this little guy will be crawling soon!

Is his belly bigger than it should be?
Not really – he is just a big baby. Brodie’s spleen is still enlarged – this will correct itself over the next couple of years. Baby’s tummy muscles still haven’t developed yet so once he starts walking it will thin out

Mama Side:

As you can imagine my heart sunk when we discovered this on Monday. We have been doing SO AMAZING!!!!! I thought to myself – nooooooooooo! On the outside Brodie looks so fabulous and healthy – How is this possible??

Quickly, I brought myself to the reality that we are ALL living in now – the brilliance of this is that it IS possible. I keep reminding myself of how lucky we are to be in an era where as yucky as these procedures are, as grueling as some of the hospital days are – we CAN and we ARE making this possible through technology and medicine.

The reality is the next couple months are not going to be fun. In addition to our medications – I will now be delivering these shots to a wiggly, adorable, not afraid to show his sad face little, attitudy-judy little love nugget. My heart will probably break a few hundred times, I will probably cry a few days in there, BUT it is preventing him from getting ANY major surgery (right now) AND HIS LIVER IS HAPPY!!! And he is here, with us, smiling and crying through it all.

So I choose just to remind myself on a good day give thanks, on a bad day give thanks – life is a gift and this little sass-a-frass 9 month old is reminding me every day.

The next 30 days is critical to us understanding the resolve of the blood clot so think, pray, meditate for the blood clot to slowly diminish and his portal vein to be blood clot free!

Surprisingly I find myself at peace with where we are. I have found myself snuggling with my little warrior and reminding him – “Life is tough my darling, but so are you… “

May you all have the courage and the mindset to overcome whatever you may be striving to conquer.

LOVE & GOOD VIBES
XO – TT

#‎brodiesgoodvibetribe #‎sliverofliver #‎TIGUEtough

Update: 02/16/2016 - In-Patient

2/16/16: Update - Brodie had a long day so far up at 4AM pokes, prods, sticks, scans - all the while not being able to eat (in order to see everything properly you cannot eat anything) - especially the way this chunky monkey chows!! So you can imagine how happy a 9 month old tater tot is when you take away his food.

Just a little bit ago we successfully made it out of his CT Scan and he has slowly made his way out of his anesthetic state and we are waiting on the results. Update to come...

Thank you for your prayers, good intentions, sweet vibing and juju - we need it all.

This little guy has my heart as well as my liver and I know he is loving both as we snuggle through this.

#brodiesgoodvibetribe #sliverofliver #tiguetough

Update: 02/15/2016 - Blockage in Portal Vein Discovered

2/15/16 - Appointment 1 of 3 complete. Stick. Draw. Dominate. The Vein Whisperer Big John working his magic as always!!! 😍 i like to say this is Brodie's victory dance!! #brodiesgoodvibetribe #sliverofliver #tiguetough

2 out of 3 Appointments Complete! Dancing, giggling, writhing, wiggling his way through the hour long ultrasound while Holly and Renee patiently explored their way through veins, vessels, arteries and flow as well as the rest of the liver world. #brodiesgoodvibetribe #sliverofliver#tiguetough

12744062_1685819181677767_4740930203126132959_n.jpg

3 out of 3 Appointments Completed Cleveland Clinic Children's. Slight hiccup today after reviewing of Brodie's Ultrasounds - there is some sort of blockage in his portal vein going into his liver.

Best case scenario is it is something minor, middle case scenario would be it is his portal vein walls are thickening and worst case would be a blood clot.

All of these things can be corrected different ways.

We will be admitted tonite for a CT Scan tomorrow and although the scan will be appx 5 mins he will have to be put under so he does not move. His veins are as thin as a strand of hair - clear pictures are critical.

Nothing is life threatening just trying to address things as quickly as possible.

Please say a prayer, send good vibes, channel good juju our way!

We have to do an IV which is going to be super challenging bc he is bigger, more aware and loves to play with everything.

#brodiesgoodvibetribe #sliverofliver #tiguetough