Update: 11/09
What an emotional day today was – we are exactly three weeks POST LIVER TRANSPLANT - HOORAY!
We spent a long day down at Cleveland Clinic and it was emotionally hard for me and Brodie. Brodie knew exactly what was going on today ,at every stop, like never before.
We walked in to go see Big John (the best phlebotomist in town) and I laid Brodie on the table and he started wailing and crying big huge crocodile tears. What??? Usually that starts when the needle enters his arm – but it was like he knew exactly what was coming… Of course John was amazing as usual and we blazed through in less than a minute and were done with Brodie howling at the top of his baby lungs…
We ran into Val and baby Grace who were waiting to see John as well – Grace is doing great – she is 28 days (I think) post transplant and rocking it! We are so thrilled for them! She is so stinking cute – if you want to follow their journey you can here Grace's Journey
After the Brodie meltdown I needed a Starbucks break so we motored downstairs so I could soak in a Skinny Vanilla Latte for my shot nerves and on the way I ran into a High School Friend and then a College Friend both fellow BGVTers - great fun catch-up chats. That was a nice relief from the craziness that I had just endured.
Then in the Starbucks line I ran into some of my favorite SICU team members that cared for me. They of course did not recognize me (which I was blown away by - b/c I am SURE the train wreck I looked like straight out of transplant surgery resembled what I looked like today – HAHA! Wink Wink)… But it was so fun to see them and catch up and to let them know how Brodie and I were doing. They were just like I remembered them – kind, fun and caring.
That is one thing that I have thought going through all of this is how hard it must be to be in medical field – you shower patients with love, care, compassion in their toughest time and then POOF they are gone. The constant questions of what happened to them? How are they? Etc. would race through my mind and you would never have any closure… how hard!
With a red-cupped Skinny Vanilla Latte in hand we made our way down to get our first ultrasound for B-man. Ultrasounds are so important. They take us about 45 – 60 minutes and the Ultrasound Techs look at everything – every section of the liver and surrounding areas. They look at “flow” and how blood is moving through the veins, the connections, the portals – they look at everything surrounding the liver, they look at the measurements of the liver itself and many other things.
Imagine being a 5 month old with the gooey stuff smothered on your belly by an incision that is tender and a wand pressing into the area that you least want someone to touch you. OH YES – one more thing – the less movement the better. So as you can imagine. This went fabulously (NOT).
Again as soon as I laid Brodie down on the bed – he knew – exactly – what – was – coming. UGH. Big huge crocodile tears. The wailing began and my heart flipped. Our tech had so much patience as my Mom and I worked to calm him down. We eventually were able to complete the ultrasound as we worked our way through tears – hunger – sleeping – repeat.
After any ultrasound typically what happens is the Tech will take your imaging and run it by the Dr – usually the news is good when they come back and say you are all set! Today that did not happen – the Dr came in with the Tech there was something on the U/S that looked like fluid gathering next to a portal vein and they could not figure out what it was. We left the appointment with them reviewing past U/S to see if they could figure out what “it” was.
As we were leaving and walking to our next destination – lunch. I received a call to let me know we needed a little more blood pulled - for another test – so back to John we went. Annnd you can imagine how that went. Poor Brodie. Poor John. Poor Grandma. Poor Me. BUT we ALL made it through – short and dramatic 😳
So now we were back to lunch and had a couple hours to wait for our next appointment with our favorite GI – Dr. Radahkrishnan and for Brodie to get his staples out with Tichy. Hours ticked by and it was time for us to have the last appointment of the day.
As we were waiting in the room Brodie was happy as they come laughing, playing, smiling, the whole shebang – and literally as Dr. Krishnan, Nurse Tichy & Nurse Filisky filed in – the fuss bucket came right back out. Brodie was not worried about impressing the troops and skeptically sized everyone up and was not happy with what he anticipated coming.
The team was happy with what they saw – a healthy, on the upswing little guy. Numbers looked good – we dropped a med (woot woot) – his eating has increased and we started him on cereal. All good. The discovery on the ultrasound will be monitored and we will watch that through next week with another ultrasound to see how it progresses. This happens sometimes and could end up to be nothing that corrects itself or it could turn into something we have to wait and see.
Brodie had 21 staples holding his incision together – those were ALL removed – 3 weeks post transplant and our little man is almost all put back together again.
As the staples were removed and Brodie was again crying with big tears – I too hit my breaking point with big tears in my eyes. I was talking to Nurse Jim Filisky who assured me Brodie was not crying because he was in pain but because he was being held down and wasn’t being allowed to move. Nurse Tichy of course was amazing at removal – but dang it – too much crying in one day. And then – she was done.
And just like that my little guy didn’t have one staple in his belly and a beautiful rainbow scar that will quickly fade over the next couple months to a light scar line to remind us of where we have been
I am in constant amazement that this “normalcy” happens so quickly and he is so resilient. It is amazing to me and I am in constant awe of his little body and the radical recuperation it shows.
As we were pulling ourselves together in the Drs office out the window and across the courtyard - on the roof of another Cleveland Clinic building with a majestic sunset as the backdrop there was a helicopter landing.
My heart skipped a beat – could it be an organ coming in to save someone’s life? Could this be someone’s beginning? In three weeks from now could someone be getting their staples out because of someone’s gift of life?
I urge you all to consider gifting life. Save a life. Have you ever considered being a LIVE DONOR? Have you checked Organ Donor on your license? Too much to consider? When was the last time you donated blood?
You have the power to save a life. You have the choice to save a life. This is a gift anyone can give. It has no cost. You can leave a legacy of life by choosing to be an organ donor.
Lists of those in need of organ transplants are long. Lists of those who are donating are not long.
If our story has inspired you - think of how you might make a difference in someone else’s life and how you might change the footprint that you leave on this world.
All the tears we had today were so worth it. They are tears of living. They are tears of growing. They are tears of health
Brodie is winning. Brodie is defeating. Brodie is everything organ donation is about.
What a brave, brave little warrior.
“and she loved a boy very, very much – even more than she loved herself” me and the giving tree have this in common.
XO - TT