Update: 04/27 - Just. Cannot. Cannot. Cannot. Cannot. Last week was outshined by Brodie’s surgery and I wasn’t able to share with you all the significance of what it held. We are SIX SEIS SEKS months post transplant.
“Take pride in how far you have come and have faith in how far you can go.” I remind myself as I whisper every morning to Brodie – you are brave and you are strong – go warrior go… Not a day goes by that I am not grateful for every step in our journey.
Yesterday was so special for us because we knew we would see everyone (with a couple of surprises).
I got to remind them that as serious as our follow ups were there was also reason for celebration 6 months post transplant baby!! WOOP WOOP!!
Y’all think I am crazy. I know you do. Drs visits fun?!? But this amazing bond happens with the people who care for your family through this.... So I can only illustrate what today was like…
Walking out of the elevators onto the 10th floor of the A bldg. at Main Campus at Cleveland Clinic – I am always nervous and excited – We are about to see our people.. this is the “general surgery / transplant floor”…
I have met some pretty spectacular, amazing, incredible people who are employees and patients here on this floor. I have learned so much, been so inspired by peoples’ stories, been lifted when I was scared and felt alone – but others openly shared their journey and hope with me.
Jeanene – our favorite “welcomer” – makes us smile and laugh and feel so special – greets us with a whoop and a warm hello. Our little trio quickly turns into a little group as more people come to say hi filled with hugs, high fives, excitement and disbelief about how well (and big) our little warrior looks.
After we disengage from the front office we get shuttled into a room and Dr. Hashimoto and NP Tichy-Dreher comes in – I can’t. these two. My heart swells and they look over the “patient” Brodie in between getting sucked in by his giant toothy (up to seven) grin, his chunk cheeks (which I now tell people have been zoned for their own zip code) and hilarious skepticism (check out the pics) and then realization of the love.
Then a knock-knock on the door and “my guy” aka my surgeon- Dr. Quintini walks in to say hi! – I reminded him that 6 months ago I was probably being high maintenance mama drama on morphine and he smiled and reassured me I was not (maybe – ha).
More visitors, more well wishing...
Brodie and I had to abruptly peace and hair grease our way out of there down to the basement to go get our Ultrasound to see how Dr. Sands’ handiwork was looking.
We checked in with Jennifer who is always smiling and helpful, got our pager and took a seat. Brodie was in the mood to entertain others by loud pterodactyl screams and outbursts in between cheerio binges.
I look up and none other than THE Dr. Sands himself is coming to escort us to the u/s room. This man is awesome.
What a surprise! He re-adjusted his day to come and see how B-man is doing. We catch up quickly on our brisk walk and get to the darkened room for the inspection on the stent situation...
Rachel our u/s tech does not waste any time she jumps right in and Dr. Sands instinctively starts evaluating what he sees.
As the ultrasound begins you find yourself sweating like you are in 5th grade gym class again… Will they find everything is okay? Will there be an issue? And as black and white and colorful visions play out on the screen. You wait.
Within the first 5 – 10 mins Dr. Sands reports that things look well. Very Very Good.
I am so so very very relieved, happy, ecstatic, amazed that once again. Sheer relief washes over me.
We have made it. Once again we have made it. We have made it.
A knock – knock on the door and one of our favorites is coming to say high to us – Angie – just to see little Brodie and thank goodness she was there – he literally is in love with her – so it distracted him for awhile... but he was NOT being a star patient for the U/S.
After that u/s we then went back to see our “liver guy” Dr. Radahkrishnan – this went smooth Brodie was a wild man at this point and a little rambunctious but Dr. Krishnan like a pro played with Brodie throughout the appointment…
He answered my questions about sunscreen – was there anything he couldn’t use? No.
Brodie is about to switch from Breast milk (I am done pumping y’all – and it is great!!) I have enough frozen milk to last another couple weeks – Boom one year down!) to whole milk is that a problem? Nope you are good. The only dietary restriction is grapefruit.
Our appointments are turning into monthly appointments, our lab work and ultrasounds are now every other week and we have 7.5 weeks of shots left (hopefully).
On the way home I reflected... I have so much respect - pure deep rooted respect for those who are involved with the medicine world.
It made me deeply breathe and really think about everything. These teams, these individuals who have sacrificed so many things to dedicate their lives to helping others. Helping others re-start life.
I can only imagine some of the beautiful endings they have helped write as well as stories they wish could be re-written…
I then wondered what it must be like for you to literally watch your work that your hands and care were responsible for… and know life is being lived that you have partial responsibility for that.
How powerful. How very special.
Which leads me to me...
Right now. Here.
I am giving myself permission to breathe, live life, give, love, reflect and not worry about the what ifs and could bes.
Because right now.
We once again, with our army - our front line at Cleveland Clinic Children's, with our faith, with BGVT spirit running through our souls, with our warrior’s resilient amazingness.
We have risen. We have conquered. We have defeated.
Proving this life, this precious life is worth living and embracing every brutal beautiful magical moment.
XO - TT