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!