Hi Y'All it is me!!!! Your favorite official liverless liver giver...
What. A. Week. Weeks like this are what movies are made of. So as Emily shared with you - we have officially given new life to our little guy. It is a miracle.
Em has done a great job bringing you up to speed - yesterday was a roller coaster and the days that I knew this process would be made Of.
I was up early because of this upper chest gas pain (i will have it for another month or two) it makes me restless and uncomfortable. (I am doing well otherwise - walking, minimal eating soft foods, etc.) we did some walking laps here and rushed over to brodie"s.
We saw his super outstanding surgeon dr. Hashimoto and amazing nurse tichy and they were reviewing progress and things. Here is the short version of happenings:
A majority of lines were removed (oxygen, catheter. Etc.)
He is packed with bile and air and they sucked a ton out of his tummy. (Over 180+ ccs)
He is going to be able to eat today - probably!
A lobe in his little lung collapsed - he can fix it just deep breaths and coughing and crying
His skin color is amazing. 17.2 billirubin score pre-surg and 2.2 post surg
Things are looking good and we are excited!! So i left going to get my first shower of the week - woot woot!
I got my shower and felt amaze and was excited and proud to carry down a tub of devoted and determined breastmilk from pre-surgery so he could eat!!!
Went down to see him and things were a bit different...
A line had stopped working his awesome nurses caught it and took care of it - it was scary
A new line was placed by a pediatric heart surgeon and Brodie tolerated it very well
Feedings are on hold for now because Brodie had some bleeding from his tube that drains his stomach (not the incision site). The docs think it could be an ulcer or an irritation from deep auctioning earlier.
Big John (the vein whisperer) drew blood for labs in about 0.2 seconds. Brodie loves him 💚
Brodie is alert and active and being snuggled by daddy mommy and grammy right now.
Roller Coaster Ride.
We are hopeful today I will be able to feed him - based on how everything looks.
It is exhausting and hard and everything your mind would imagine it to be. But it is a miracle. I am looking at my little guy who is awake, alert, alive and looking better than ever and he is running on a brand new organ... I meannn can you even fathom!? It is amazing. I am amazed.
I held Brodie and cried for about 5 minutes simply because I am so thankful - and just a Mama watching her little sweet beautiful baby fight harder than most adults would and seem unphased. He just keeps getting better no matter the hurdle.
The Cleveland Clinic Team here is the best From the liver specialist team to the PICU to the xray/ultrasound/respiratory techs to the GI team to the SICU to j8 to every single hand that has been laid on us in between. So thankful - heartfelt thanks.
I tell everyone about our TRIBE and how life and people are amazing. I tell them about everything you have done for us and how you are getting us through.
I ran into some BGVT tribers here at the clinic - who have there own medical challenges going on. We are all warriors - we just are! They all had huge smiles and just love!
Love pouring out from me and my little warrior. We are loving the good vibes and need them all. Love and be kind to each other today!
*disclaimer i am on medicine and totally sleep deprived so emily may correct anything off 😉