Update: 11/20 - I have struggled to write an update this week… I am so overwhelmed with so many emotions I just can’t seem to pen my thoughts because I am not thinking straight… So here goes nothing....
Every morning I am waking up and I hold my breath… I think I go through my morning motions without breathing sometimes… I am afraid to. What if.. What will.. is playing in my mind..
And then as I am holding my breath peering into Brodie’s crib for the first time – I see a gummy (still toothless) smile, big shiny eyes – that play with my mama heart strings – and literally scream at me “we are going to have a great day mama – let’s do this!”
And that is how my confidence is increasing each day – because my 6-month old is speaking to me with his beautiful eyes telling me we will DOMINATE this day and every day here on out
Right on, little warrior. Right. On.
There was an author Thomas S. Monson who said “The past is behind, learn from it. The future is ahead, prepare for it. The present is here, live it.” And that is where I am trying to focus my thoughts and “train my brain” to focus on – take each as it comes and LIVE.
You see we are out of the “clear” as the operation stands, however, with anyone who has gone through a transplant there is always “fear” that lingers around…It is like lurking in two corners just waiting… Those two “fears” revolve around two things – rejection & infection.
When you receive an organ from someone – anyone – it is foreign to your body so there is a chance that the body might “attack” that organ and start rejecting it.
Someone recently asked me so when are you in the safe zone? When do you know that Brodie really has accepted your liver? That stumped me so I talked to the team at the Clinic about it.
The answer? Never.
You never really know you are safe – and you never really are. That is why you take the immunosuppressant (that is the time sensitive medication – you take it twice a day – 12 hours apart). This is what Brodie will be taking for the rest of his life. Which is fabulous that we have this medication but there is something about this that isn’t so fabulous…
Oh…why wouldn’t this be fabulous you are wondering? Well… Let me share. What does the immunosuppressant do? It dials down your immune system so it doesn’t attack the liver. Which in turn also makes you much more susceptible to – the 2nd Fear – INFECTION
What season are we starting to get into? Cold and flu season. Bllaaaahhh – icccccckkkk. So the whole army of anti-bodies that you have when you are healthy – that army is being wiped out (not entirely but to a really small fleet of soldiers) daily by the medication.
What that means to us is infection right now is high on the radar of reality – it is not a question of IF Brodie will get sick it is just WHEN will he get sick.
Of course our hopes are that it will be after the New Year so it gives his body time to heal his liver and his liver is strong before anything starts making it work harder than it should. We are taking meds right now for infection that we will eventually get off of but they are helping us through this period. Anything can happen.
So as we are preparing for the future – we need to be living in the present – so let’s discuss...
What does this mean for our reality?
It means LIVE our life and be SMART – stay away from people who are sick with cold and flus. Do NOT let people touch our little love nugget. Keep his beautiful-hands-on-I-Want-to-help-with-everything-big-3-year-old-sister out of the room when she gets sick. But remind ourselves that is life we need to be proactive and smart – “the future is ahead – prepare for it” we need to be on point with a plan and know what we need to do.
As for our current reality – yesterday was BRODIE’S ONE MONTH LIVER BIRTHDAY!!!!!! Can you believe it has been one month? We are straight out of the gates of being one-month POST LIVER TRANSPLANT SURGERY.
I am here to yell from the rooftops (move over Santa) WE ARE BILIARY ATRESIA FREE and doing AMAZING.
You all would not believe it – you simply would not. This little warrior, this little love nugget, this little amazing fighter is doing just great.
Here are some major “normal baby” milestones that we have had in the past two weeks:
· Rolling over back to front (thanks to Grammy’s boot camps :)
· Starting cereal, green beans and squash (LOVES cereal, HATES green beans, Undetermined on squash)
· Starting to sit on own
I mean what??? This little guy who just had the biggest surgery ever is acting just like a normal six month old – just with TON of med intake and a huge healing incision. It is such a miracle to watch. Let me bring you up to medical speed for “The Bro-meister” (as Harper refers to Brodie).
Monday is our big day at the clinic as you all know – we started with our favorite phlebotomist in town – Big John who always gives us his best. This blood pull was a little harder than normal – John explained that Brodie’s veins are starting to harden and scar so it will continue to get harder as we go – especially since we are coming in two days a week. UGH – last thing as a Mother you want to hear – like blood pulls aren’t scary and hard enough to go through NOW from a facilitation standpoint they will even be HARDER… nonetheless John was a true blue rockstar and we were done in about 3-5 minutes – Brodie wailed and cried – but nothing a bottle couldn’t fix.
We continued down to get our Ultrasound. Remember last time there was the pool of liquid that had formed next to his portal vein (so in our minds we were on pins and needles)… We needed to see how things were going and see how “IT” was progressing. During the ultrasound Brodie was a completely different baby than last week – minimal tears just a wiggly little guy. Our tech Missy had taken care of us in the PICU and was patient and I think Brodie was a little taken with her – he wanted to help her out and held on to the wand as she whisked through picture after picture of all the fluid flow, exact organ measurements and Blobs (J) to make sure all was accounted for and on point.
We then had our “TRANSPLANT CLINIC” to review everything (remember this is where ALL the staff comes to you GI Team / Surgeon / Nurses / Psychologist / Pharmacist / Dietician / etc.)
Here were some of the main points:
· Brodie has GAINED almost 2 LBs and is weighing in at 17# 12oz – woot woot! Starting off on a good note!
· We are getting off AquAdeks (this is the orange stain pain – WOOP WOOP!) and on Vitamin D
· Our blood draws are going down to ONE DAY A WEEK!
· The mass has GONE DOWN and at this point looks like it will self correct itself – WOOT WOOT!
In Summary, Brodie is healing and on track.
As I am typing this I just got notified that our story got picked up by Parents Magazine – WHAT????? What is going on – I am amazed and thrilled that people are responding to our amazing journey.
Sooooo LET’S DO THIS - in true rock star fashion let’s jam to what the legend Jon Bon Jovi says “Believe in love. Believe in magic. Hell, believe in Santa Claus. Believe in others. Believe in yourself. Believe in your dreams. If you don’t, who will?”
Let this six month-old warrior Brodie Tigue allow you to believe.
Believe that your wildest dreams can come true. BELIEVE that what you THINK might not be possible – IS. BELIEVE that what might be HARD to achieve – CAN BE. BELIEVE that what might be out of reach – STRETCH a little farther. BELIEVE that maybe, just maybe, you need to BELIEVE.
XO - TT