Living Donor - Emotion vs. Logic

09/17/2015

Brodie had a great day today - I think he was happy to be home and not be poked and prodded. His tummy has gone down and he seems comfortable despite going through surgery. He had his 4 month drs appt and received 3 of his vaccinations and developmentally is on point. His spirits are high, the living is good and I think he just loves being home.

Our 3.5 y/o Harper is having a tough time understanding what is going on. We are trying to help her understand what is happening. i started sharing with her that Brodie's liver is really sick and that someone was going to share their liver to help B-man feel better... To which she responded - "Well how in the world are they going to do that!?!?" I just kept it simple - there are very special drs and nurses who know just what to do.

Now it comes to one of the most critical decisions of this process - one that I shared with you already. The Living Donor. Emotion or Logic? Let me state somethings up front. I simply cannot convey how overwhelmed we are with the selfless, loving, intention filled choices all of you who have called or even considered calling have had on us. There are over 70 people who have called to learn more about the process - (don't stop! We are looking for a perfect match - it could be you!!!) ummm I do not even know what to say. It is a life changing moment for you and an absolute life gift for my son and our family. Thank you.

Tonight I must make the decision of whether I will donate my liver or if we open the gates to all of the inquiries. This is nerve-racking, heart-wrenching, soul-searching question... (I wish someone could tell me what the right decision is)

Here is what you need to know: 
If I donate - I am not allowed to be my sons caretaker through the process (Russ would be and I would need an appointed care taker for me)
If I donate - I cannot pick up and hold my baby for up to 4-5 weeks (he can be placed on my lap)
If I donate - I cannot drive back and forth to the hospital or anywhere
If I donate - I cannot manage the aftercare of my son (which is one of the critical pieces of this process)
If I donate - what short term / long term impact will that have on Harper?
If I donate and he rejects my liver - who will save him?
If I donate and he would need a 2nd transplant down the line - who would be the back up? 
If I donate he might be healthy for the rest of his life - There are people that say the neurology and physiology an organ from your biological parent makes the transplant rejection lessen but no studies to prove it.

My point in sharing this is for you to understand how overwhelming this decision is. There is so much to think about. And I am sick over it but comforted by knowing either way we will get him a happy healthy sliver of a liver.

What you have all shown me is our support system is wide and deep and no matter what we choose you will help us through this "life test" and get little Brodie well.

Today was a hard day for me emotionally - I am terrified, optimistic and humbled by the outpouring of love and support "our tribe" has shown us.

‪#‎brodiesgoodvibetribe

 

Uncovering Biliary Atresia

August 22nd - 26th

Summer fun and the livin' is easy - One of my best girlfriends Cole invited me and the kids to come down to her family's Lake house which is about an hour and 45 minute drive one way for some weekend Sun, Boating, Beaching, Playing and S'More Cooking - so we went down for the weekend. On the night we returned Russ was giving Brodie a bath and got him out of the bath and we saw that he had some bruising on his lower spine and on the base of his head. The bruising was a deep purple and red. I was horrified and the only thing I could think of was maybe I put him in the car seat the wrong way? Or he was sitting funny and that 2 hour car ride must have done that... The bruises did not bother him and we kept an eye on it and eventually the bruises went away.

Week of August 29th

Later on the next week - we saw bruises on his sides - they were right where you would pick a baby up. They looked like finger prints. How could he get these? He is always in loving hands in the family and there was no way that he could have gotten these through an abusive situation. We talked to our family and our nanny Allie and made sure everyone knew to be gentle and that he had bruised - of course everyone was horrified and made sure to be gentle moving forward. On the side of his little body I noticed a very hard "pearl like" nodule that had formed. We had our 4 month wellness appointment coming up and I thought that I would just bring it up then - as he was in no pain. The bruises went away but the little nodule stayed.

On Thursday I decided to do what every parent HATES to do to their little love nuggets - CUT FINGERNAILS. As I was delicately combing over every little nail and trying my very best to not snip anything that was a wavery, flimsy nail - I of course failed, miserably and nicked the surface of his little ring finger. I am talking nick, barely there - and it bled for about two days and would. not. stop. Finally through constant cleaning, neosporining, bandaiding and socking I got it to stop. I couldn't believe it. A little cut and that much blood.... Hmmmm my mind was starting to think something wasnt right.

Labor Day

Wheels up and we were motoring for some more fun action down at my friend Cole's Lake house - this time the whole family packed up ready to go and we were off. When we returned - we were giving Brodie a bath again and noticed bruises on his spine and the base of his head (the same places as before). This time fear set in something was not right. Why is this happening?

The next day was Labor Day and Brodie showed no pain, he was not uncomfortable but I was very bothered. On Tuesday I called in to the Dr. to try to get an appointment. I talked to a couple different people explaining the symptoms and I was told that the earliest I could get in was that Friday. I was a little unsettled so I called my amazing nurse on call friend Ria and told her what was going on and asked her opinion - which was call them back and tell them that you need an appointment NOW or go straight to the ER. I called back and was worked in for Wednesday AM at a Dr. that was 45 minutes across town. At that point - who cares - I just wanted my little guy to be seen.

At least tomorrow I would have answers.

The Diagnosis

The Diagnosis

Today we learned that our little guy has Biliary Atresia. His liver is very sick and he will need a liver transplant. I am O+ blood type which makes me a possible live liver donor for our little guy. I have also had 4 family members who are also matches volunteer to donate. There are many things you have to go through to become a donor - I am overwhelmed by their selflessness.

My heart has broken a million times today and been put back together by my brave son. Brodie is a fighter, he is strong and he is going to win this battle. Knowing we have a network of people (all of you) has been amazing.

The survival rate of infants out of surgery who have had liver transplants is at 95% and 86% survival after that. They then go on to have 100% normal lives.

Please continue praying this was the first step of a long, hard journey. I will be making a website with more information and to share our story and provide updates. we need all the support we can get - Our little guy is amazing and the rest of his body is really healthy. ‪#‎brodiesgoodvibetribe

Introduction to our Liver Tale

Brodie joined the world on a beautiful May day... He was sweet, sweet perfection - he was 8lbs. and 12 oz of straight sugary love. We were so excited to have our little guy join our family. My husband and I could not believe we had a boy and were thrilled to introduce him to his Big Sister Harper. She was enamored from the get with him. He was such a fabulous little newborn great sleeper, eater and pooper - what more can you ask for??

Right away we noticed that his skin tone was very different than his sister's. Harper was fair skinned, blonde hair and blue eyes and he developed what we all affectionately referred to as "A TAN" straight out of the gates. He had dark hair and a tan to go with it. We often joked that he was just destined to be tall dark and handsome. Brodie also had yellow at the corners of his eyes that we constantly were questioning. We also noticed that his tummy was wide - we affectionately referred to it as his major "milk belly".

Like most parents we wrote down our concerns and consulted our Pediatrician - we were comforted and told that this would go away - all babies are different and that this too would pass.

Calling Brodie's Good Vibe Tribe

9/13/2015

Calling on all to be part of Brodie's good vibe tribe! Tomorrow at 11:16AM he will be having surgery to look at his liver, bile ducts & gall bladder - this is discover surgery to diagnose what he battling. We are confident in the Cleveland Clinic's team and their capabilities, our little guy is the bravest, toughest peanut we know - he will be celebrating his 4 month bday. Please send good vibes, love, anything towards him and the team working on our guy. We are overwhelmed and so touched by the incredible love and support we have had... Thank you so much!

In ICU

9/10/2015 -

Life took an unexpected turn this week. Our little Brodie has been in the ICU in Cleveland Clinic since yesterday. He had unexplained bruising and bumps that We took him to the Pediatrician for and they sent us to Cleveland Clinic oncology immediately. The team of amazing drs is trying so hard to diagnose what is wrong with him - it is something with his liver Monday is a big day for us as he will have explorative laparoscopic surgery to explore the liver. Brodie is so happy and from the outside looks like a regular happy 3 month old... The power of prayer and positive thoughts is something I am asking for your help on. Please send positive thoughts / prayers / vibes / mojo our way. Light a candle / add us to a prayer group or chain - anything!!!!

The Day that Changed our Lives

9/9/2015 The Day that Changed our Lives


Our days started like any other day with hustle and bustle getting ready - got Brodie up ready to go and then Harper. Our Nanny - Miss Allie came over I worked a little before I left. Soon it was time to go loaded Brodie up in the car and we were off.

We were going to see a new Pediatrician since my typical office could not fit me in we had about a 45 minute drive across town. I tried to not let my mind race telling myself I was overreacting and that everything was going to be fine. telling myself that I was probably overthinking things and that it was fine.

We got into the office and shorly after us being there Dr. Varga was able to see us. You know how Drs. typically are jamming on their computer keyboard while you are talking? Well Dr. Varga just sat there and listened intently and said things like tell me more... what else... and that is when I started to think my suspicions might be valid. She checked over Brodie and then shared with me that she too was concerned about what she was seeing and hearing and that she would like to get some bloodwork done. Before she put the ordered in she wanted to call a specialist to see if there was any order they would put in. So I waited while she made some calls...

About 15 minutes she came back and said that she had talked to the specialist and they too were concerned but instead of us getting the lab work done next store they would send us straight downtown to Cleveland Clinic Main Campus - ONCOLOGY & HEMATOLOGY. My heart sunk.

 

We were seen right away. Everything is sort of a blur. Their fear was that this was Leukemia. They took blood. I sat there with Russ and our happy baby. This is what leukemia typically looks like in children the Dr. said we will find out soon. They ran the blood. 45 minutes later we had the results.

It did not look like Leukemia. THANK GOD. BUT we cannot be 100% sure because Leukemia is sneaky and can show up in other ways. So we need more testing. They are worried about some other things too, Brodie's blood was not right especially something they called INR which was about the blood coagulation (clotting - remember Brodie's fingernail / nail fiasco from a couple days before?) The normal score should be at .8 Brodie's was 9+ (the highest you can score on the test).

The testing game was on. We flew from floor to floor from machine to machine trying for this machinery to tell me what is going on with my perfectly happy adorable little guy. What was going on? I didn't understand - he was just fine... right? This was the first night of many in the Cleveland Clinic's Pediatric Intensive Care Unit (PICU) Floor.