I finally have Internet here at the Ronald McDonald House! Yeah! I feel like I've been out of touch. Thanks to Shauntelle for updating the blog for me on Friday morning.
We had hoped to get Mason listed by this afternoon, but we've been thrown a new curve ball!
One of the blood tests that is part of the pre-transplant work-up measures the level of CK (creatinekinase) present in your body. CK is an enzyme that when elevated above the normal range can indicate muscle damage or deterioration. This test is used to diagnosis two things that I am aware of and these are heart attack/ heart failure (because of poor function in the heart muscle) and a disease called Muscular Dystrophy. One reason it is part of the pre-transplant labs is because heart transplant can not be performed on individuals with certain types of Muscular Dystrophy. (Why? I am not sure!)
Here is our curve ball: Mason's CK came back mildly elevated above the normal range. Most likely this is all because of his poor heart function but because Mason is not walking yet (although, as far as I know all the heart kiddos in failure like Mason have delayed motor skills due to low strength and energy AND he is pulling to a stand all the time now!!!!), the transplant RN began to ask me some questions........such as does anyone in your family have muscular dystrophy?
And I answered too quickly!!! I should have told just a little white lie if I had only known the truth would prolong Mason getting listed today!!! (Okay, I really wouldn't have lied, but it is tempting to think so!) My answer was: YES, Mark's sister has 3 of 6 children with Spinal Muscular Atrophy which is a form of Muscular Dystrophy.
Do I think there is any chance Mason has Muscular Dystrophy? NO, well I guess I'm safer to say 99.99 % sure, because I've learned to never say never! He is so much stronger than my sweet nieces and nephew ever were and has accomplished more motor skills than they ever could, but I can't argue with protocols right?!
Here is what has to happen now to get Mason on the list............
He has to have a consult and evaluation with a Neoroskeletal doctor here a Lucille Packard (Stanford's children's hospital). But, it is a 7 month, yes 7 month wait to get into him as an outpatient! I about went into heart failure myself when Esther (Mason's heart failure RN) told me that! But Esther already had plan up her sleeve to get is into him ASAP as an inpatient, thank goodness.
The plan was to get Mason listed today or tomorrow and then next week admit him for a 2 day stay for his first IVIG (Intravenous immunoglobulin) therapy. This is the treatment used here at Lucille Packard to attempt bringing down some of Mason's antibodies, which if it does would open up Mason to a larger donor pool. (I will explain more about the IVIG treatments as I learn more myself!)
The new plan: Admit Mason this afternoon around 5pm to start his IVIG treatments and then the Neoroskeletal doctor will come see him tomorrow as an inpatient. Okay, so this was a very quick change of plans, but we will do whatever it takes to get Mason listed ASAP!!! I do know Mason has guardian angels and a very loving Heavenly Father watching out for him and leading our way right now....I am just along for the ride! I'm trusting this little curve ball is part of the Big Plan to get Mason his new heart.
Thank you for all those at home helping out my family. The meals, the carpools, the phone calls, the concern, the love, and most importantly all the prayers!! Please pray with us also that Mason's 'soon to be' donor family may be comforted through the tough times that lay ahead for them. I cry just typing this, thinking about some family out there having to send their precious child home to Heavenly Father in order for my baby's life to be spared. It is absolutely heart wrenching.
I will update again when I have any new details.
And just a couple photos for now:
This was the day Mason and I left for Palo Alto.
All my darling kiddos in their Stanford shirts.
( Thanks to Heather who sent them home
with us in December after Mason's evaluation!)
Introducing 4 of Mason's biggest Fans!
They are cheering on Mason and the wonderful
doctors and staff at Stanford who will be caring
for our Miracle Mason!!!
Preston, Braiden, Kaitlin, Ammon
Many people have been asking for our mailing address here:
Ronald McDonald House at Stanford 520 Sand Hill Road, Palo Alto, CA 94304-2001
Good bye for now! Hugs and Kisses to my family at home that Mason and I miss sooo much!!!
ps. Please grab one of Mason's cute button's on the right side of my blog to put on your own blog! They were made by a dear Heart Mom Friend. (AngelStephen'sMommy)