UPDATE: REVENGE OF THE CLOT–PART II - It is with heavy fingers clickity clackiting on the keyboard that I get to give you our update – as you all know we have been cruising in a safe zone, labs have been spectacular, liver functionality off the chart (well this is not clinical but if there was an amazing liver score I think we would have one – HA!), Brodie is thriving, crushing milestones left and right – as well as anything in his way for that matter.
Yesterday, we were hosting friends in from out of town and I didn’t have my phone on me so when I went to go check it I had about 20 new emails, 8 texts and 5 voicemails. One being from our Liver Transplant Team - one of our favorite nurses Jim – who asked me to call him back immediately.
Casually I called back thinking we would have to edit the dosage of the PROGRAF (Tacrolimus) that we administer twice a day for anti-rejection. (change in dosage is normal it is based on a lot of different variables and you need to keep it at the level requested by your team so sometimes we have to give more or less and it changes based on the level shown in labs)…
I was completely caught off guard as Jim carefully started explaining to me that on our last Ultrasound is showing a change in the Portal Vein going into Brodie’s liver the area where the clot was discovered last March and it is thickening (remember we went through a 9 hour surgery in April to get 3 stents placed to widen this last year) – I sat there dumbfounded.
Hot, confused, totally taken off guard, mind spinning, tear flood gates open, I am sure I was sweating and the words came out of my mouth, “Jim I hear what you saying but I didn’t process anything can you repeat.”
This time I ferociously wrote down everything he was saying and had to push emotion to the side (even though tears were streaming down my cheeks) to comprehend what was going on.
Then I think I repeated it back 2 – 3 times to make sure I was clear – poor Jim. He showed the upmost patience – he repeated as I clarified…
Long story short – the passage in the Portal Vein to the Liver the “walls” are thickening – imagine a large fire hose connected to garden hose and all of the water coming through the fire hose spout to the smaller mouth of the garden hose – no good.
How do we fix it? We will have to have Interventional Radiology procedure with the amazing Dr. Sands to see what we can do to treat this.
We won’t know what the solution is until we get in there – we possibly might be able to do angioplasty or place another stent. This procedure will most likely take 2 – 3 hours depending on how things go once they get in there.
Tomorrow we check in bright and early at 6:30AM at Cleveland Clinic Children's on Main Campus for our little warrior once again to put this clot in its place.
Today we went to our home away from home to visit OUR FAVORITE VEIN WHISPERER – the gentle giant Big John – you guys. He is THE BEST. THE BEST.
We got labs drawn today to prepare tomorrow – Brodie basically struts around like he owns the joint – HA. He even put the arm down on the chair you sit in to get blood drawn.
John as usual is a total pro and the whole time Brodie (who I am bear hugging) is uncomfortable because he knows what is coming but John talks to him very calm – showing him the tube colors – talking him through. Sometimes I think about how happy I am about our draws and that Brodie can make it through screaming and thrashing being pinned down by me and then after the needle is out he is high fiving John and saying thank-you. And then I am overwhelmed by I cannot believe this is my normal and get sad and then think to myself there are for more worse things than blood draws – like a yo-yo mama mindset.
If any of you have seen me lately I have probably told you that literally Brodie is Bam-Bam from The Flintstones he is a Brute – just today my dad told me he is like Godzilla destroying everything in his way – but at the same time he is so gentle and loving and with his melted chocolate brown eyes he turns anger to sloppy kisses in a minute.
So my motto going into tomorrow is “Love me, and I will move mountains to make you happy. Hurt me, and I’ll drop those mountains on your head.”
Dear Blood Clot, once again you have chosen the wrong warrior, the wrong frontline physician army we are coming for you. Be afraid. Be Very Afraid.
Please send us good vibes for a successful, swift procedure – my Mama soul cannot handle all of this – remember we just had his adenoids out two weeks ago?? Now this. I cannot.
So if you see a hot mess of a mama chugging coffee, sporting BGVT gear, pacing the halls – say Hi – I will need the smile break.
Go Warrior Go.
Once again, you can do it – you always do.
XO - TT