Tuesday, October 29, 2013

Keep Calm and Carry On.... (Biopsy Results)

I'll make this short and quick today. Mason's biopsy results were not what we'd hoped for.... not that zero rejection that would have been so very nice, or even just better than the mild rejection he's been hanging out with since March. His biopsy showed the rejection is slightly worse. Big bummer! (His results for those who understand Primary's scoring scale for rejection were: C2.5 V3 ISHLT 1R pAMR2) So, his cellular rejection is slightly worse and his vascular (antibody mediated rejection) has remained the same. This is still on the mild end of rejection, but has now become a chronic issue and over time can cause damage. 

On the BRIGHT side, Mason's heart and body still seem to be handling this rejection just fine. During the biopsy procedure the cath doctor measures the pressures of the heart and his heart pressures are within perfect range. In fact they are lower (better) than they've been since last year. Also, Mason's echo showed that his heart function is great and unchanged. I'm so very grateful for this!!! 

What's the plan of action? Mason will continue to receive monthly IVIg treatments which helps kill of the naughty antibodies fighting against his heart. He will stay in the higher dose range of his immunosuppressants Celcept and Prograf. And, here's the change..... that magical but awful medicine that I have a love hate relationship with, his steroid dose will be upped quite a bit. He started a Prednisone Pulse last night. Super high doses for 5 days and then slowly taper back down to the low dose he's been on since April. Mason also did this in March when we found the rejection, and then has stayed on a low maintenance dose since then. Mason is just not a happy kiddo on high doses of steroids. But, a month of grumpiness will be worth it if it will kick this rejection!

(Mason is showing off his Intermountain Healing Heart's
Heart Walk t-shirt! So appropriate!)

We've been through worse. Much worse. We've seen worse. Much worse. We all know Mason is a fighter. He's shown us and proven it to us many many times. He'll fight through
this! Hopefully this round of high dosed steroids will be the trick to finally get rid of this rejection. For now we will KEEP CALM AND CARRY ON. Taking one day at a time. Enjoying our Miracle Mason and watching him enjoy life. Not worrying too much about this rejection or reading too deeply into it. For this precious angel heart beating in him will still bring him many more years to come! 

With such high suppression on the steroids Mason will have to skip preschool for a few weeks. This makes me sad, because he loves it! But, it's not worth the risk of him getting sick. After discussing it with Dr W, or great and amazing pediatrician, I decided to let him go to preschool this week because it will take a few days for the steroids to build up and fully suppress his immune system. Then Mason will pretty much be home bound by this weekend. This way he will at least be able to go to his Halloween party at school. 

Thank you for all of your prayers, positive thoughts and wishes, concern, and love! Have a safe and happy Halloween!

“Come what may, and love it.”
~Elder Joseph B. Wirthlin
(This quote is from one of my most favorite talks.
Which I went back and read last night to deal with
 my frustration and disappointment of this biopsy!
To read the talk go to HERE.)


cici said...

Hi Summer. Good to hear about our little Miracle Mason.
I really feel like he just needs more time to adjust to his new heart.
Others who have NO rejection from the beginning have been wiped out of all their antibodies that will return sooner or later down the road and cause way more severe problems. I have seen this one too many times.
I hate steroids too, they really can turn a young boy into a werewolf, but it;'s just for a little bit and then he will be back stronger and hairier than ever. ;)

Big hugs to you and your beautiful family!

madelyn said...

You are always in our prayers. May Almighty God continue to protect and heal Mason.

p.s. I can't believe how big ALL the kids are getting :) What a beautiful family.