Update: 10/27
Hi Tribe!
Just a waterfall of things happening in our neck of the woods!
As I shared with you all I was officially discharged on Monday and I left my sweet little guy and my big guy at Cleveland Clinic Main Campus in Brodie’s new room on a Pediatrics Floor.
My chauffeur Leann carefully taxied me home and I arrived home to a sweet welcoming home party and my most favorite three year old sitting waiting for me not quite sure how to react with her Mama finally coming home - but there were balloons, streamers posters, flowers and most importantly a CLEAN HOUSE! I was so excited to be home with Harper and all at once it hit me like a wall - I was exhausted. I snoodled with my girl, tried to eat the little bit of food my tummy can tolerate and hit my bed like a ton of bricks.
This whole past week I have been running on adrenaline fueled by fear, excitement, happiness, sadness, confusion, angst, hope - just everything. So this concoction paired with - the drs visits, lab draws, medicine check-ins, pumping sessions, visitors, and my ability to zoom (and by zoom I mean wheels up in my fine silver stealth wheelchair) from one building to another building to see my little guy - limited my sleep and rest.
I still have not recovered from exhaustion and sleep. I still am way behind and overwhelmed with the thought of trying to catch up. So I am just taking it as slow as I can - which I don’t really cooperate with myself on this - I find myself walking fast instead of slow, I find myself reaching for things i shouldn’t, I find myself wanting to eat the whole English Muffin instead of half, etc. So the pain part of recovery physically has been better than I anticipated. My incision looks amazing - Dr. Quintini did an such a great job - it is healing so nice and has been just a little painful. (Medications of course totally help!!) I gave myself a laughing injury the other day - I was cracking up and pulled a muscle under my rib on the right side. This is more painful than my actual incision. Note to self: When people are being hilarious leave the room.
If you do not hear from me or I haven’t connected with you please understand I am in between being with Harper, scheduling the next day, talking to nurses or drs., at the hospital with Brodie or maybe sleeping… I am not ignoring you I swear!!! I just need to spend a little time on me.
So enough about me let’s talk about the little Warrior - we got great news today - HE IS BEING DISCHARGED ON FRIDAY!!!!!!!!
His levels are doing great and decreasing where they need to decrease - we (me and Russ) are paying special attention to the five things that they have explained to us are the “most” important - big picture wise. All liver functions - ALT, AST, INR, Bilirubin levels & and then there is the immunosuppressant that he is on - Prograf and we are watching that level.
Most of the levels you cannot physically see but there is one that you CAN see the change and that is Bilirubin. Bilirubin is what made Brodie appear “tan” or “golden” before - Bilirubin is a yellow pigment that is in everyone’s blood and stool. If you ever notice someone most likely a baby or someone who’s liver is not functioning correctly you may notice a yellowing of their skin or in the whites of their eyes - we refer to it as “jaundice” and this is caused by high levels of bilirubin - which is made up of old red blood cells broken down and not processed the right way.
Check out the picture I posted with this one was taken one day before the transplant and the other was taken 8 days after. His Billirubin level before the surgery was 17.2 and today it was .8 - you can see this through his skin color. It is really amazing.
Our good vibes are working and our little man is just rapidly loving his new liver, taking everything in stride and showing that just because he is pint size does not mean he can be pushed around - “And though but he be but little he is fierce” yes, yes he is Shakespeare. We are winning, he is winning and he is winning in the game of life and the game of health. Game on.
I want to tell you all so much more but I must sign off to catch up on my sleep.
Thanks for your love and support and make sure you take time for yourself today - no matter your size be fierce and show your spirit.
XO - TT
*Disclaimer: I am still medicated so please excuse any gibberish