Update: *SIGH* it is very begrudgingly and unhappily that I have deliver this not so fun news.
Monday, April 18th 2016 (ONE week from today) we will once again be on the war path watching our little warrior rise and conquer yet again ANOTHER SURGERY.
On April 1st we were told by our Liver Transplant Team Cleveland Clinic Children's that Brodie’s blood clot is in fact NOT progressing in the way that it needs to be and surgically needs treatment.
Ironically, it was April Fools Day - so of course followed up with – is this a joke? Is this your very "unfunny" way of April Fooling us – Knowing full well it was not. But it was worth a try…
Boo. A BIG fat BOO. Not fun. No Bueno. Just RATS.
You see a blood clot is like plaster (or at least this is the analogy I have pulled together in my head). If any of you DIYers out there have gotten into a bout with plaster this will make sense…
If you are doing wall work and put some plaster on – the longer it sits on the wall the harder, it gets.
If you catch it right away you can quickly wipe it off, but if it sits it requires some more elbow grease and chisels or other tools to get it off the wall AND if you do NOT use the right tool – the wall sometimes comes off with it! EEK!
So treatment of Brodie’s clot is all based on the texture and consistency - Soft, Medium, Hard, etc. As far as we can tell his clot is about 2 – 2.5 months old. This means that it is probably out of the “soft” phase and into something more hard. All going back to WHY it is so important to have the right “hands” doing the procedure.
Our liver transplant team will not do the procedure they have another team of All-Stars that highly specialize in this Cleveland Clinic – the Interventional Radiology Team.
On Friday we met with Dr. Mark Sands and his PA Patricia "Trish" – they could not have been more informative, kind or patient as our 10-month old warrior destroyed the Drs. Office with toys, cheerios and pterodactyl shrieks.
Dr. Sands explained often he is the “opener and closer” for liver transplants.
He worked through the appointment showing us images of Brodie’s CT Scans and Ultrasounds that have captured the progression of my liver healing and becoming Brodie’s little organ. He explained to us the options, risks, benefits and silver linings all of which we choked down realizing that this was our option.
Time is of the essence. We need to treat sooner than later.
Brodie will be in appx a 5-hour surgery - they will make an incision that is about a ½ inch. This will be on his right side of his ribcage about an inch above the arch of his rainbow scar.
They will go in with a probe (picture a long super skinny wand) that will be able to display images on screens in the room. As they navigate through his liver and find the portal vein where our arch nemesis the blood clot is holding strong the Drs. will determine their plot to “attack”.
You see, we will not be able to know what we are dealing with until we are in there. Dr. Hashimoto will be sitting in with Dr. Sands to ensure that any treatment would not interfere with any other procedures down the road.
Here are the options:
Option One: Angioplasty – this is where they “remove” the entire clot – the clot has to be in soft condition to do this. Based off of what they know there is a 10-15% chance for this option.
Option Two: Stent – this is where they will insert a coil that looks like a Chinese finger trap into the clot so it can open up the portal vein so flow can return back to normal. This is most likely the option that will be chosen.
*The bummer with this is that Brodie is so small his little vein size is appx 4MM the stent they will probably use is 6MM so this will be temporary – when he is 10 or 15 or 20 he will have another surgery to remove this and insert an adult size one which is 10 – 12 MM
Option Three: Vein Removal – This quite honestly terrifies me and there is about a 10-15% chance we may be here – where they will “CUT OUT” his vein and replace with another vein. This cannot happen on Monday and will be an entire different surgery.
My greatest hope is that Option One – Angioplasty will be possible but I have a sinking feeling our reality will not lead us there.
Oh... and as if this could only get a little worse. We will continue to give the shots (twice a day) of Lovenox. Probably for the next 6 months...
*Big Sigh* *Huge Sigh* *Maybe a couple of tears*
As you can imagine when any loved one gets set up for surgery you think no no no this is not happening…. then you realize that yes, this is your fate and you must do this. then you move into analyzing your situation.
Here is what I have come up with:
We are in our backyard
We are at the Cleveland Clinic
We are working with the best of the best
Trust
This is scary
This is uncomfortable
This is treatable
We will get through this
Have faith
Things could be worse – a lot worse
This is treatable
Brodie is warrior
Our family is strong
Believe
Annnnnd repeat
Once again, I am drawn to the eyes of innocence – big brown eyes that twinkle at me – his new thing - stinking out his tongue when he does ANYTHING. He gives me a big 4 toothy - with 4 more toothy coming in grin – his whole aura shimmering at me…
I keep imagining a thought bubble coming from his little head (don’t you wish babies came with those?) “We can do this Mama. We will do this. We already moved a mountain. This. This is nothing.”
His mindset is very much like a Chinese Military Strategist Sun Tzu - “Courage, above all things is the first quality of a warrior.”
I must have courage just like little man. We must trust where we are.
Most importantly we must have faith in all the hands that are guiding us from above, in the Cleveland Clinic, the prayer, amazing intentions, good vibes, juju, mojo and everything else – we will RISE, CONQUER and DEFEAT once again.
No. Other. Option.
So in the meantime we will sail through the week! We are SO looking forward to seeing you all at the Cleveland Indians game – of course we wouldn’t miss it! This is now our BIG send off.
And what does a Mama do to soothe her aching heart and wandering mind? Much to Russ' dismay - take family pictures of course – HA! He is such a good hubby!
I hope you enjoy some of the photos that my dear friend at Shannon Ahlstrand Photography captured of our family! She is amazing, awesome and incredible to work with - in Westlake - always seeking out new clients!
We LOVE LOVE them and are so excited to share them with you.
So once again I find asking for your love, GOOD VIBES and support as we go into another adventure in our LIVER LOVE TALE.
XO – TT
#brodiesgoodvibetribe #BGVT #sliverofliver #TIGUETOUGH #donatelife