Update: 02/17/16 – Brodie has a blood clot in his portal vein going into his liver. We have been working with our Cleveland Clinic Children's Transplant & Liver teams to get our 9 month Warrior on track.
Bad News: This is very serious and could develop into some threatening conditions
Good News: We caught it early enough that there is still blood flow going through the vein around the clot so we are not at that place yet
Bad News: There is no treatment for the current blood clot
Good News: The blood clot will eventually eliminate itself into the vein walls
Bad News: The treatment is 2 shots a day (of Lovenox a blood thinner) – this will prevent the clot from getting larger OR other clots to form
Good News: At this point it will PREVENT us from having to do any INVASIVE surgeries
Great News: This has NOTHING to do with the FUNCTIONING OF HIS LIVER - that is still FABULOUS (WHOOP WHOOP – YESSSSS – Cha Ching!!!)
Questions you may have:
How is this caused? Anyone who goes through a major surgery is subject to blood clotting – in Brodie’s caes there could have been a teeny, tiny, eency-weency clot that had existed and has just progressively grown over the past month – this does not have to do with his liver functionality.
Does he have more clots?
At this time there are none that have been detected.
How long will he have to be on Lovenox?
We are not sure how long Brodie will have to be on the shots – it might be a great 1st Birthday present (3 months) for him to get off – time will tell.
How will it be monitored?
We will do ultrasounds to watch the progression of the large blood clot.
What if this doesn’t work?
We will evaluate that down the road but it would be potentially an invasive procedure.
How does this impact lifestyle?
It doesn’t. Brodie can still eat and be as physical as any other 9 month old. And if his round ole belly will let him hopefully this little guy will be crawling soon!
Is his belly bigger than it should be?
Not really – he is just a big baby. Brodie’s spleen is still enlarged – this will correct itself over the next couple of years. Baby’s tummy muscles still haven’t developed yet so once he starts walking it will thin out
As you can imagine my heart sunk when we discovered this on Monday. We have been doing SO AMAZING!!!!! I thought to myself – nooooooooooo! On the outside Brodie looks so fabulous and healthy – How is this possible??
Quickly, I brought myself to the reality that we are ALL living in now – the brilliance of this is that it IS possible. I keep reminding myself of how lucky we are to be in an era where as yucky as these procedures are, as grueling as some of the hospital days are – we CAN and we ARE making this possible through technology and medicine.
The reality is the next couple months are not going to be fun. In addition to our medications – I will now be delivering these shots to a wiggly, adorable, not afraid to show his sad face little, attitudy-judy little love nugget. My heart will probably break a few hundred times, I will probably cry a few days in there, BUT it is preventing him from getting ANY major surgery (right now) AND HIS LIVER IS HAPPY!!! And he is here, with us, smiling and crying through it all.
So I choose just to remind myself on a good day give thanks, on a bad day give thanks – life is a gift and this little sass-a-frass 9 month old is reminding me every day.
The next 30 days is critical to us understanding the resolve of the blood clot so think, pray, meditate for the blood clot to slowly diminish and his portal vein to be blood clot free!
Surprisingly I find myself at peace with where we are. I have found myself snuggling with my little warrior and reminding him – “Life is tough my darling, but so are you… “
May you all have the courage and the mindset to overcome whatever you may be striving to conquer.
LOVE & GOOD VIBES
XO – TT