Tick... Tock... Tick... Tock...

Update: 10/16/2015 - Tick tock…Tick tock… Tick tock….

Oh what’s that? How can I concentrate on anything else when the invisible made up clock is going non-stop in my head… We. are. getting. so. close.

48 hours from now we will be admitting ourselves into the hospital

60 hours from now we will be entering a new chapter of our lives

Tick tock..Tick tock…

Things are getting real around here. We had all of our pre-op meetings with our teams yesterday. Final consultations with the surgeons, nurses, social work, healing services, blood draws, GI Teams, etc.

We are good and cleared - we cannot get sick before go time so I have been contemplating bubble life but cannot quite get down with that just yet…

Here are some things that I walked away with from our meetings:

I realized that i have spent SO much time learning and trying to digest everything that I could about Brodie that I have spent very little time thinking about myself (whoops) isn't that so funny? I mean if you along were going in for this surgery - wouldn't you want to know anything and everything about it? Normally, yes. But because Brodie is going in with me I am having a hard time focusing on me and haven't been as engaged in details about myself as perhaps I should be…

My surgery will last closer to 8 hours - so I should be getting done around 3PM

I will not be able to eat for the majority of the week I am there - like at all. Me - not eat. Oy Vey - I am not sure how this is going to happen… So since I have found that out I am not holding back when it comes to food intake… They of course will get my nutrients through an IV so not to worry.

I will have like 4 - 5 lines in for the week which will be annoying but there are worse things - expect some glamorous documentation selfies

Brodie being 5 months is not eating food so I am still supplying breastmilk and am hoping that his food supply will not be depleted because of surgery and I will be able to regulate it after the surgery - so I will be working with lactation consultants

We talked a lot about my mental state and how I will feel after the surgery…Which is always an interesting conversation because I am sure my answers vary based on my mood of that moment.

Will I be stable - hahaha yes? maybe? I think? if not can we blame it on the drugs?

Will I be a wreck - potentially…

Will I be ok with others taking care of Brodie - I think…

Am I prepared for not being in control - ummmmmmmmm… maybe?

I mean…honestly…. how can you prepare yourself for that? I have been giving myself pep talks and telling myself Brodie will be centered around love and positivity and that is what he will and does need the most. And I just have to be okay with that will not be coming from me directly I will be good vibing him myself!! Like right now, I am even struggling writing this sentence - for me to even mentally put myself out of the picture with him just makes me really sad. So I will have to overcome that major hurdle…

Here is the thing, Russ and my Mom will be with Brodie - which they are both amazing. Russ is an incredible, attentive Dad and my Mom is the kindest most nurturing soul on the planet. So of course he is going to be in perfect hands… not to mention the incredible nurses so yes of course he will be fine. He will be. It is just… well you know… No one does it like me - my little guy if you could see the way he smiles and looks at me - you would just know what I mean…

On a brighter note here is something fun - the Cleveland Clinic treats their donors top notch - so I will be staying in a wing that is typically designated for the very wealthy i.e. Royalty from other countries, Celebrities, etc. So maybe this will be my opportunity to rub elbows with some of the Elite - HA! We can swap stories and I can get some legit Hollywood gossip - bet they won’t be able to say they are there saving a life! Don’t worry I will snap a selfie with them if I have a good run-in!

Here are some new happenings with Bro-Man

Brodie’s weight is up but they think that some of that is due to water retention in his tummy

His INR levels (which is what originally we were in the ICU for - blood not clotting or coagulating) are also elevated

He also seems to be getting a little more uncomfortable when he is trying to “fill his diaper up”

We hear him whimper and cry during the night and I wonder if he is in pain…

Remember how they gave us the timeline of 5 - 6 months? Well here we are right at 5 month mark. So grateful we have our day Monday!

Really the only updates on Brodie post surgery from my last timeline update is he might be able to start eating a couple days after the surgery - they will start with a teaspoon of some milk to see what happens and how he responds and go from there….This makes us very happy.

So outside of the serious stuff I have to tell you all - I am FEELING THE VIBES!!!!!!!!! WE are feeling the vibes!

You ALL are incredible. The amazing love notes, messages, cards, texts, thoughts all are driving this amazing momentum of this positive energy surrounding our little Brodie.

I wanted to share some of the awesomeness that we have gotten since we have started our “relationship” of the BGVTribe - take some time to look through the pictures to see what an incredible group you are part of.

Keep the tributes coming - I am putting together a scrapbook together for Brodie and Harper to show them the amazing people who have been lifting us and supporting us through his time.

Bring it on!

Unity of love. Unity of faith. Unity of spirit. Unity of positivity. Unity of Good Vibes.

All 17 pounds of our little sweet strong warrior man will need all you have! Please keep it coming.

Tick tock..Tick tock - see? It doesn’t stop.

My next post will probably be from the hospital - so until then - be kind, love yourself and help someone else feel good about themselves.

LOVE - XO - T

‪#‎brodiesgoodvibetribe ‪#‎sliverofliver ‪#‎tiguetough

What happens next - The Transplant

Update: What happens next - The Transplant? 10/13

A lot of you have asked me to explain what actually happens and the process for a transplant because let’s be honest most of the population does not know about this - unless you have had someone in your world go through this experience - so I thought I would take some time to share with you what will happen during Brodie’s “LIVER BIRTHDAY” or “Transplant Day” and the recovery period.

First here is some interesting Liver 101

Our liver is the 2nd largest organ besides the skin

Our liver performs over 200+ functions for the body all at once

Our liver is the only organ that GROWS BACK or regenerates - cool huh?

Sooooooooo to the best of my current understanding here is what will be unraveling…

Sunday - 10/18

We will both (Brodie (Russ will be with our guy) and Me) be admitted into the hospital (Cleveland Clinic Main Campus)

Monday - 10/19

The “games” begin - And may the Odds be ever in our favor….

Traci

7AM Traci gets sent down to the OR - surgery should last appx 4 hours

They will remove 25% of my liver and gallbladder and immediately transport my liver over to Brodie

Your LIVER is UNDER YOUR RIGHT RIBCAGE

My scar will be from where my bra-line is to right above my belly button a straight line down (there is a possibility they my have to make a backwards L for access but TBD based on accessibility)

12PM Traci will be out of surgery if everything was on time and proceeded as anticipated

Recovery

Immediate

Later on that afternoon / evening I should be able to “sit-up” I will be in the SICU recovering

The next day I will be transferred to a different area and I should be able to start walking - just a little - more and more with each day

I will not be able to put shirts over my head that will hurt too badly

1 - 2 Weeks Post Transplant

My LIVER WILL 100% be back to normal size

4 - 6 weeks Post Transplant

No driving

No lifting anything over 5 lbs - which includes Brodie and Harper annnnnd laundry baskets and other household chore-like things so I guess this is the silver lining

6 months Post Transplant

No drinking alcohol

For Life Post Transplant

No more liver donations - sorry y’all heart emoticon

Brodie

730AM - Brodie gets sent down to the OR - Russ will take him down and walk him to the doors) his surgery should last appx 8 - 12 hours

Russ’ friends / family - love my big guy - I cannot fathom going through this - send him texts, emails and messages to help alleviate some of the insanity that he will be going through!

They will remove Brodie’s liver and Gallbladder and completely replace his liver with mine

They will create all of the ducts and connections - just like it was his liver originally connected and created. SO AMAZING.

Brodie’s scar will be ginormous and pretty malicious - it will be either an upside down Y going from one side of his little tummy all the way to the other side and up to his “bra-line” OR it will be a straight line.

This is closed with stitches and staples

He will be immediately admitted to the PICU and stay “in an induced sleep” for at least 1-2 days - depending on how he responds to everything he will be sedated for this time and will not be responsive to us - this is so his body can focus on healing (this will be terrifying)

He will have many lines in that they will eventually take out one by one…(this will be terrifying)

Venilator (to help breathing0

T-tube to drain bile

IV tubes / catheters

Recovery

How long will he be in the hospital?

2 weeks - 2 months

Average is 2 - 3 weeks

This will depend on how things go and how he recover

What happens after the surgery?

The immune system will not recognize the new liver and will start to attack it. This is called “rejection” and in order to overcome this Brodie will have to take immunosuppressants - this will suppress his immune system which will make him very susceptible to picking up flus and colds - much more than you or me

There will be regular check ups that will consist of blood tests and start 2 - 3 times a week and eventually go down to once every couple of months and even once a year eventually!

Brodie will be on anywhere between 10 - 20 medications again depending on how he is responding and how the levels are measuring through blood tests and eventually the medications over the next year will be down to 1 immunosuppressant - he will have to most likely take this twice a day for the rest of his life

He will have a bit of a learning curve and then will be back on track to hit milestones just like any other little love nugget - Sitting / Rolling over / Standing / etc. He will just have a minor set back.

We keep reminding ourselves the following things:

He will not remember any of this

Babies are resilient - the stories we have been following these little fighters are sitting and rolling over weeks after the surgery

He is strong and “healthy” and will make it through this just fine

Just because he has been diagnosed with this does not mean this is a diagnosis of how he has to live his life - he will be a bouncing beautiful non-tan pink looking baby boy before we know it

Life is meant to happen. Stories like this, like ours - is what makes this life, this world so eye-opening and incredible - Brodie and I will have physical scars to show for this life changing event and it most likely has re-routed our life paths without us even knowing or planning for it. The impact that this will have on me, Russ, Harper and Brodie - and all of our immediate family and yes even Brodie’s Good Vibe Tribe - is the incredulous ripple effect.

“Just as ripples spread out when a single pebble is dropped into water, the actions of individuals can have far - reaching effects.” - Dalai Lama

Keep good vibing, challenge yourself to look close around you today and find someone that just might need some extra oomph and mojo and turn those good vibes on. Make a ripple in your world and in those around you. You are helping us get through our ripple - continue to do so and keep us in mind as our date gets closer - 6 days to go!

XO

‪#‎brodiesgoodvibetribe ‪#‎tiguetough ‪#‎sliverofliver

Getting Ready for our Big Day

Update: T-Minus One Week 10/12

Your official sliver of liver giver here - Oh my goodness…We are getting so close to go time I cannot even begin to describe the million things that are going through my and our heads…It is crazy! Next week at this time I will be done with my surgery and Brodie will be halfway done with his.

We have gotten so many questions around the emotional state of this part of our journey - are we excited?? YES! This is something that is super exciting and we even celebrated - WOO WOO! We are giving our little guy a chance at life - beating Biliary Atresia!

We told Harper the other day about what was happening - I said

“Harper you know how I have been spending SO much time at the Drs.? Well guess what? They called me and told me that I am going to be able to share MY liver with Brodie!”

She clasped her hands to her face and bent her knees - almost like she was going to spring in the air and said - “Mama that is such GREAT NEWS! I am so happy for you - and us.”

Tears - she is just the sweetest and has been so awesome with everything - that day my amazing friend Heather sent a customized Shutterfly book all about Mommy & Brodie go to the hospital. That has been our top read 10 x a day as you can imagine - she loves seeing her name and her family in the pictures. A librarian also suggested that I puppet play out what is going on and we have been doing that too. I am relieved and at ease with how she is responding to everything.

Brodie is doing good! He is such a trooper. He just smiles, coos and screeches a majority of the day. Gets really HANGRY (hungry+angry) if we don’t feed him quickly enough. We had a couple days where he was really fussy and of course that sends us into “OH NO - what is wrong with him? Oh no? Is this something major?” But the symptoms they have told us to watch for are fever, lack of appetite and being lethargic - all of which never pop up. I have to tell us that he is STILL just a 4 month old baby! Who is not perfect and has to still be a baby all while riding shot-gun to the Biliary Atresia we are dealing with. So we need to constantly talk ourselves OFF the ledge when we have those days.

We had a big day for Brodie the other day - his baptism. This was thrown together last minute because of the lack of my planning and not getting it done this summer. St. Marks in Cleveland was nice enough to get Deacon Dave to accommodate us on a weeknight. I do not think i have shared with you all the pains of the medications that we are on right now. We have 6 medications that Brodie is on orally (3 - twice a day) and one little special creation is called (for my Pharma friends out there) - AquaDEKs - which is a blend of vitamin of D, E, K - well this little concoction is bright and I mean bright orange. This should be illegal to give to any child under the age of 10 - because it gets everywhere (through drool, spit up and poop) and stains everything (onesies, shirts, blankets, etc.). Soooo back to the baptism - Brodie was all dressed in a crisp white little Tux and he looked so stinking cute. And of course - you have probably guessed it since I am spelling out the colors for you - major blow-out from kneecap to mid spine of gooey-oozy orange poop. I am telling you we had to throw out everything - onesie, pants - all of it. I was sweating - embarrassed, annoyed that we didn’t anticipate his explosion (ha) and that he wouldn’t be in white for his big day…

I really think that was God telling me to lighten up have a sense of humor and seriously drop the planning! After a 10 - 15 wipes clean up (an avg diaper change = 1-2 wipes) - Russ and me laughing - I had to think to myself heard you God - laugh our way through this - loud and clear - over and out!

‪#‎brodiesgoodvibetribe ‪#‎tiguetough ‪#‎sliverofliver

100% Official

Video Block

Double-click here to add a video by URL or embed code. Learn more

10/09/2015

Well everyone it is 100% official - we are thrilled to say WE are approved by the Cleveland Clinic....Brodie will be getting 25%-30% of my liver on 10/19!!!!! He will be 5 months and 5 days for the transplant!!!

The good vibes are working! Keep them coming! We are 10 days away from go time!

Will post more later on what is to come but Brodie and me had to share our fabulous good news!!!!!

‪#‎brodiesgoodvibetribe ‪#‎tiguetough ‪#‎sliverofliver

Unnerved and Moving Forward

Update: 10/05

I am a little unnerved this week as we are anticipating all that will unfold over the next couple of weeks and find myself thinking "is this real life"??

I have always had a plan. Always. I am a problem-solver and a solution-finder and I work until it is planned, executed and followed through on. So being in this purgatory of having a plan but helplessly being on someone else's clock is so excruciating.

However, action is happening this week and I feel like time cannot move fast enough as the minutes tick and turn to hours I find myself anxiously awaiting what is next...

Today we will go to Brodie's team to check in to see how he is doing - we are anticipating a positive appointment. His blood/labs were pulled and ran this past Friday and there was no calls - which you all know means a good thing! We will have an update from them on Brodie and his health.

Tomorrow I have my liver biopsy and will get the results on Weds. If that is cleared I will be presented to two different committees on Friday to be a living donor for my little guy. And then? We wait until 10/19 - Brodie's New Liver Birthday!

Brodie will also be baptized tomorrow evening! (Finally I had every intention if doing it this summer -oops!)

As for Brodie this weekend I found myself lost in a moment of Baby screeching, cooing and lots of smiles and he was so happy and it was an extreme "mama moment of connection" where i was so lost in him that when I remembered "the clock was ticking" I had one of my emo-basket-case breakdown moments where... I couldn't help but to think about his baby innocence how it is going to be stolen so soon. It already has been. The unfair pain he has had to go through and what his future holds for him to be subjected to.

Those are the dark teary black moments that I have to literally tell myself to rise above and not get lost in the hazy mist of dark doubt and focus on what we and I can control which is how we respond and remind ourselves long term reward - long term reward - LIFE! He will not remember this.

I keep falling back on the saying "Tough times don't last but tough people do." I think about all of the people that I have met in the halls of the Clinic and others that have reached out and shared their stories - and they made it through. They are living life and they completely dominated their tough time - even if they didn't feel like that at the time - they totally did! Living proof right in front of me.

So what do we have to do? Keep on trucking. Making our way through these upcoming weeks - trusting the hands that are guiding and working on us. Brodie's Good Vibe Tribe hands that are lifting and supporting us. And keep moving forward - because that is what we all do - everyday.

Take time today to focus on you. And be thankful for what you have going on. And if you are going through a tough time - know you will rise above it! You can and will - that is what we are telling ourselves every day - there is no other option!

‪#‎brodiesgoodvibetribe ‪#‎tiguetough ‪#‎sliverofliver

Things are in Motion!!!

Update 09/30/2015: Things are in MOTION!!!!

Mark your calendars - we have a tentative set surgery transplant 10/19/2015!!!!

Brodie just got approved and listed on the National Transplant List – this is great news! In order to receive a deceased or living organ you HAVE to be listed. His PELD score is a 14 so he is very low on the list which is why it is so amazing to be gifted a living organ. The higher score the worse your health is.

For me to continue to be the living donor there are some things that are still pending…

They have to biopsy my liver to ensure it is not too fatty. Think of a steak – have you ever had a sirloin that has fatty parts of it? Well your liver can be like that too and they want to make sure that mine is not before we get into surgery. My BMI is over where it should be (*cough cough – I am saying that it is because I just had a baby… 4 months ago – HA)

They are also finalizing some of the blood tests to ensure that the functionality of my liver is spot on – Brodie will inherit everything that my liver does – so this is really important.
If these two things pan out we will GREEN LIGHT for our big day 10.19.2015

Brodie is great – he just learned he has vocal chords that he can use! He is screeching and cooing and making sure you don’t forget that he is in the room. His belly has almost healed from his first exploratory surgery on 09/14/15 which was a little over 2 weeks ago – this is where they went in through his belly button with a camera and did a biopsy. He is happy and filled with smiles.

Harper is doing really good – she knows that Bro-Meister (as she calls him) has his big surgery coming up and the special drs are going to work on his liver. She gives Bro-Man, the nurses & drs - a special blessing each night in her prayers. We are keeping it totally positive and talk about how exciting and lucky it is that he can get this “fix” and he is going to love his new liver. We have yet to share with her that I am going to be the one “sharing” my liver… We will do this soon though so she can process…

We have made Harps “THE LEADER OF BRODIE’S GOOD VIBE TRIBE” which she is LOVING and also made her the Sanitizer Sheriff (clean hands only and always). She has also decided that she would like to be a Mermaid Princess for Halloween so we are prepping for that… She is loving pre-school and just started her Tutus and Toddlers dance class so we are doing sparkle fingers and pirouettes for Brodie to entertain him.

The Tigue Team Tribe Leaders (me and Russ) are hanging in there and keeping it positive. Planning for this is truly a full-time job – we are allocating care takers for Harper / Brodie / Paulee our Pooch and Me. So as you can imagine the A-Driver, planner in me is in full gear.

Helen Keller said “Keep your face to the sunshine and you cannot see the shadows.” That is something that has been driving both of us. We are firmly set on that we will defeat and overcome – there is no other option.

I cannot tell you how amazing you all are… I have been getting love notes, texts, pictures, comments on this page, in email, on the phone and I READ ALL OF THEM – sometimes 10xs over during my low points! I apologize for not getting back to you all – please know that I am SO APPRECIATIVE OF YOUR SUPPORT!

We need you to keep helping us through this!

We have been planning our first fundraiser for Brodie’s Good Vibe Tribe & Biliary Atresia awareness – we are putting together some Brodie’s Good Vibe Tribe Gear we hope you will all support and wear to show us your LOVE and CRAZY support on our big day and weeks (and weeks) of recovery.

THANK YOU to all of you who have contributed to the MEAL TRAIN & GO FUND ME that was set up for us – we were so humbled that our amazing friends set it up and you all would consider helping us through this time. I cannot even begin to tell you the emotional roller coaster of gratitude, disbelief and amazement you have all set in motion for us. The world is a better place because of you and you have made a difference in our lives forever.

Keep the good vibes coming – the smiles, prayers, positivity and kindness is needed for us and all around you – keep Brodie’s Good Vibe Tribe in mind for your good intentions. We love and are so humbled by your support!

19 DAYS UNTIL GO TIME!
‪#‎brodiesgoodvibetribe ‪#‎tiguetough ‪#‎sliverofliver

The Decision

9/26/2015

The Decision:

Friday was a big day for us!! I had just finished up my testing on Thursday and getting the bloodwork results to see if I am a match any time.

We started our day with a date with best phlebotomist in town Big John. And as usual he was amazing - Brodie only cries when he gets the band on his arm and it took John about 60 seconds from prick to full vial.

The labs for Brodie are how they monitor the medications and vitamins he is on to make sure his levels are stabilized and controlled and ensure his liver is not worsening.

We leave Big John to go meet with Brodie's medical team to get him checked out. We are anticipating the appointment to go well and the biggest thing we want to understand is Brodie's timeline and when they believe things will start worsening.

Our team is roughly about 4-7 people - nurses (pre & post), drs, surgeons, residents, etc.

The labs are in and team reviews - everything looks great. No changes since last week. Brodie is growing (still in 80th percentile +) and he, at this moment, today is in "good health" the meds are doing what they should and his body is working as it should to grow.

Which brings us to the big Q: How long will this last? They share with us that there is no true answer and everyone is different and in their experience they see a decline at 5-6 months.

Brodie is 4 months and 2 weeks.

We talk about the things that could happen and how things should go. We leave on a happy note and have positive outlooks.

While we were in that appointment my coordinator called - Donna - and she let me know bloodwork was back. And the preliminary screen was reviewed by her and the surgeon and......

I. AM. A. MATCH.

You know that feeling you see in movies where the whole world stops and that person is the only living breathing thing and everything else is frozen...and then boom.

Back to reality - I tell Russ quietly - "I am a match..." And then a bit louder "I am a match...."He looks at me intently and I say "We can proceed forward if we would like..."

We discuss for about 10 seconds (not including the hours of debate we had earlier this week) and without a doubt both of us say lets do it.

None of the cons seem to matter anymore. Brodie needs this and I am here. We are thriving on emotion.

Donna said I looked a bit scared when I verbally said the words:

"I would like to do this and be the donor."

And that is probably because I am.

You know the feeling when you pick up a crying baby and because you picked them up they just stop crying. In that moment you feel so good - your touch alone eased the need of that child. But as we all know that need and baby's silence only lasts for so long until the baby has another need, something else - bottle, toy, diaper change, etc.

Well the unknown about transplants is will the recipient ever need a new organ again? And that answer is unknown. And I realize part of my root cause hesitancy has been that I am "picking my baby up" and this is the first and last time I will be able to help him with this - because he may need another liver transplant down the road and you can only donate once.

And that is when I really have to fall back on the word trust that I shared with you all. 
I have to trust that I am the best option. 
That in this moment, this is the right decision. 
That this may last him a lifetime. That with all of the technology and science we have who knows if we will be doing transplants 10 or 15 years from now. 
That all I can do is give what I have and trust that the rest will fall into place.

And that Brodie's Good Vibe Tribe is what I need you all to help happen. Is pray, meditate, call for good intentions and good vibes while I "hold my baby" and hope he doesn't cry anytime soon. Because he is my little warrior and he will fly through this with amazing grace and we will continue to trust the 2x4 that slammed me across the face to give my little guy a second chance at life.

‪#‎brodiesgoodvibetribe ‪#‎tiguetough ‪#‎sliverofliver

The Testing

9/25/2015

The Testing

I have spent all week going through testing:
Monday: 9-9
Tuesday: 8-3
Wednesday: 8-3
Thursday: 10-3

They do not let anything go untested. Here is an overview of fun things 💉😜💊😜 I have gone through...
37 Vials of Blood💉
Chest X-Rays
MRIs
- (which I had a mini panic attack - thankfully my awesome tech Raj coached me through the 90 minute session) 
EKG
Echo
Drs Consults
- surgeons
- hematology (liver doc)
- anesthesiology
Donor Advocate
Insurance Advisor
Social Work (are we a fit healthy family - do I know what I am doing) 
BioEthics (do i really know what i am doing? Do i really want to do this? Do i really know the risks I am putting my healthy body through?)

The Clinic does a really fabulous job of educating you on everything and making sure you understand what you are doing. They also make sure you are 100% healthy (which I guess is great peace of mind right?)

As I am going through this I am starting to realize what a huge commitment just the testing is for someone to go through to be just tested as a possible match. Depending on drs availability and candidates availability it could take 5-10 business days. The candidate would have to dedicate at least 4 full days of appointments to just test to see if they were a match.

The Insurance company will only cover one person to go through at a time, the cost is astronomical - appx $150K per person. There can only be one person going through at a time and until that person opts out another person cannot start testing.

So as I share with you we were thinking about getting the top 2-3 "paper candidates" tested to see if they were a match. So lets take the information that I just shared with you and play it out...

10 business days for 1 person to go through
3 potential candidates
30 business days
That would bring is to mid-November

So this brings a whole new perspective to the overwhelming response of volunteers we had who were interested in learning more...

If we had 70 people call in and 50% of them decided to move forward that would be 35 people at 10 business days of testing - that is 350 days and would span over a year and a half.

Can you believe that???? As I am processing this I just had no idea about any of this.

And of course we are working against the tick tock of the clock...

Here are somethings to keep in mind:
- Brodie is destined to get sicker as time goes and we need to get this transplant sooner than later! But what is our timeline?(That is one of the things we were going to discuss with the drs on friday... In their opinion what did we have to work with?) 
- We are at home now but in am instant could be in the hospital if he deteriorates
- cold and flu season is coming up - if Brodie gets anything we have to wait 2 weeks for any procedure
- If I am a match - how long will it take to actually get the surgery scheduled? 
- he is so healthy now and is in great condition for him to go in and be stable in surgery can we risk waiting any longer?

So many questions... Such a different perspective and the more we think of things the different opinions we form... So much to consider and all the while this chunky monkey happy little love nugget stares at us with huge gummy smiles and has the baby innocence that as an adult wouldn't we all pay large sums of money to enjoy? Just for a few minutes?

This week has been mentally exhausting for me as we think through these things - I have talked to parents who have donated organs to their children, I have talked to adult liver and kidney recipients. I have read sad stories and inspiring stories. What I have realized as I have spent days within the walls of the Cleveland Clinic Main Campus - is this is simply the best place we could be. With the best liver transplant care team. We are close so close my heart breaks for those families that travel in for care at this amazing place that is a 45 minute drive for me and my family. Its the land of CLE people and we need to be proud of this amazing hospital system and amazing talent we have right here.

#brodiesgoodvibetribe #tiguetough #sliverofliver

The Calm Before the Storm

9/23/2015

This time is the calm before the storm truly. I find myself at peace (today at this moment ;-)) going through this process.

The struggle of decision making is real! I am on day 3 of testing and it has been a very enlightening emotional process.

Brodie and Harper have been two peas in a pod at home. They are just like in love with each other which is heart warming and hilarious. Three year old Harper is starting to understand the situation more as I have explained Brodie's liver is very sick and someone will share their liver with him. Unprovoked last night she asked me "How will God and the Drs know who will share their liver with Bro-man?" So I know her little brain is thinking and working to try to understand everything. I am grateful we have time to ease into this process.

Brodie is happy and has been eating like a champ - last time we weighed him he tipped the scales at 18lbs which is double his birthweight. Now some of that has to do with us loading up his milk with formula that is calorie packed so he can gain weight NOW!!! but little man also has an appetite to be reckoned with.

His labs from last week came back great and he seems to just be "hanging" out at his levels. We go to see Big John and Dr. Radhakrishnan on Friday for more updates.

As you all know we are in the thick of going through the Living Donor process. Our decision was for me to be tested first. This is handled with an entire different team than our team with Brodie.

I have been going through the never-ending tests since Monday - we reviewed a majority of them last night and so far it looks like I am a great match (and for peace of mind pretty dang healthy ;-)) we have done blood, ekg, echo, mri, ct-scans, consults with physicians - just to name a few. We are waiting on the blood tests which evaluate the antibodies and antigens. This will be the deal maker or breaker - the most critical piece as I understand it is the antigens. This is what will "fight" or "play nice" with Brodie's blood - so if any of these do not "match" with his - no match.

So here are some dilemmas that We have been dealing with:
- Brodie is very healthy right now his little 4 month old body is functioning and responding perfect except for his very sick liver
- His body function can change at any time - and literally time is ticking. Other organs shutting down...Infection... Cold / Flu season...
- so if I am a match do we just proceed forward "guns blazing" to ensure he goes into surgery in optimal health with no other complications? 
- or do we gamble on time and hope and pray that he stays healthy as we send one other donor through the process?
- both choices add stress to our family either way we look at it
- the safest choice for Brodie is move now... Do we risk that?

If someone out there has a Crystal Ball - please let me know.

I can give you all lots more details and even more questions that I am asking myself and we are discussing. However that takes up time and I dont want to bore you all with details. Hopefully I have communicated from a high level the perplexing, mind numbing, decision making process we are going through.

Things moved fast with testing and slow with the situation- and we are 100% ok with that. I am learning now more than ever to breathe, enjoy the little breaks, soak in those baby smiles and just be.

Trust is probably my key word of the week. Trust the hands we are in and the path we are on and the people influencing our lives each day the imprints will be lasting us a lifetime.

Your support is uplifting and so helpful. Please continue praying, mojoing, good vibing - we need it all. You are getting us through this!!!!

‪#‎brodiesgoodvibetribe
‪#‎tiguetough ‪#‎sliverofliver

Testing to be a Match

9/19/2015

Update: 
Friday morning I woke up to text messages from some of my best girlfriends - visiting NYC for an annual girls trip - at the Today Show with signs for Brodie. Talk about amazing. I was so touched and of course turned into an emotional basket-case - Brodie's own little PR squad! They even got on for 15 seconds of fame...

At 9AM we had a date with the best phlebotomist in town "Big John" downtown at Main Campus. This man is simply amazing - he draws Brodie's blood and fills the 5ML vial all within 45 seconds. He told me he has been doing this for 26 years and I am so grateful for his talent. One of the hardest things to watch has been Brodie poked and poked and poked by everyone and unsuccessfully come up with nothing. nada. no veins. I have give John the nickname - the vein whisperer and I am so thankful we found him. We will be seeing lots of him.

After that, we went down to the coordination teams office to talk through what we were thinking in regards to a live donor - we still had so many questions. They shared with us that the inbound phone calls coming were so extraordinary they have never seen anything like this before and they did not know how to respond. So they have been letting them all come in and storing them until we know how we are going to proceed.

As I have been sharing with you all - the unbelievable struggle I have been dealing with this decision. I was still toiling with it yesterday as I talked things out - I got great advice from the team - test and see if you are a match. If you aren't then you know. If you are then you know. We discussed more and then I decided you know what this is right. This is what I should do.

I shared with the team that I just wish that God would slam me with a 2x4 across the head on what the right thing to do is - to be the donor or the after caretaker and they said "Traci with the amount of people who are willing to help you and Brodie that have called in - I think he has." That really struck me.

We also chatted about the process of narrowing down potential donors besides myself. At this point we know we are over 80+ Call Ins (Ummm yes you read that right 80+ they have lost count and Still coming in!!!) - with people who are interested in learning more about the donor process. The team was going to work to narrow this down they use the following criteria – age, height, weight, etc.

At 12:30 our case was presented to the Cleveland Clinic committee in order for Brodie to be an organ recipient. At 2:45 I received the call from Donna - it was a success!!!! Now our case will be sent to state and then once state approves Brodie will be officially on the donor list.

We are now approved by the Cleveland Clinic which means we can start testing for a match.

Monday I will start 3 full days of testing to see if I a match - it will take up to 5 business days for the results to come back. I can choose to move forward or I can choose to opt-out and have them review the next best match. The surgeons will start working up a Top 3 - 5 Live Donor List and the coordination team will start reaching out to the Top Candidate(s).

As for our current situation - we are enjoying a fun family filled weekend. We have to enjoy them while we can... It is easy to forget that we are going through this… At moments there is laughter in the air – as well as toddler and infant screams. There is bustle in the house as we try to knock out what we can in the weekend. There is fun and shrill playing screams coming from the backyard swing-set with company over. There is planning for Halloween. There is Harper telling me about her new friend she met in Pre-School. There is Brodie smiling at me with nothing but baby love. There is Russ getting us excited for the Browns game tomorrow. And then I remember time is now ticking and every minute gets us one minute closer to transplant time.
#brodiesgoodvibetribe #tiguetough #sliverofliver