By the logo I have placed in today's post you have probably already figured out how Monday's ECHO and checkup went! With the results of Mason's ECHO showing absolutely no improvement, his liver being slightly more enlarged (another sign of heart failure), and my description of how poorly he is doing at home with eating, sleeping, energy level etc........ I didn't even need to tell Dr. Everett our desire to speed things up and do the Cath sooner. (Click on "Cath" to learn more about heart catheters.)
She told us she would like to have it done in the next couple of weeks to start the 'work up' to get him on the transplant list. She did ask me if this is for sure what we want to do.... and of course my answer was "YES". We are definitely for Mason getting a transplant! This is the only choice we have, to give him an opportunity to live longer. His failing heart will take his life eventually, in fact probably much sooner than I care to imagine! This all seems like a dream, a bad dream,....one you hope never becomes a reality for you or a loved one!
Then on Tuesday I got a call from the cath lab to schedule Mason's cath. When the lady on the phone said she was "calling to schedule Mason's pre-transplant catheter", my heart sank! It seems so surreal!
We scheduled it for September 3rd, the day he is already supposed to get the 'button' put in his tummy for his G-tube. So Dr. Everett asked the cath lab if Dr. O'gorman (the GI doc) could just come do the GI procedure in the cath lab while he is already under anesthesia....and it was ok'd by everyone involved. I'm so glad they will do that for us, because it saves me another trip up to Primary's.
On Wednesday, Michelle, Dr. Everett's N.P. called and said they would like to meet with us sometime before the cath to do the entire transplant consultation. This involves talking with a social worker, a transplant financial worker, a pharmacist, and the transplant team. Michelle told me that Dr. Everett said she wants to have everything ready in case the results of the cath show that he needs to be listed for a heart right away! Okay!!!!That took me by surprise!!!! Honestly, I was not quite ready for all this but am glad we are moving forward! Anyways we will meet with them next Thursday August 27th.
Mason had his blood drawn on Monday to check his antibody level. We will get the results next Monday or Tuesday. Please pray with us that his level is not too high to complicate getting him on the transplant list. He does have donor tissue on his aortic arch which was placed there to build it up during his Norwood(1st heart surgery) which can cause an increase in antibodies....but hopefully his level will still be within the "ok" range.
As I contemplate about Mason's transplant I am at peace knowing this is what he needs. I am also at peace knowing Mason is one of Heavenly Father's very special and choice children and that he has a plan especially for him. Although, I am still very scared and nervous for Mason's new medical path, I am trying very hard to focus on the blessing and miracle he has been everyday to our family. I love his cuddles, even when he wants them all night long, and I love when he smiles at me even when I know he doesn't feel good! I love my Miracle Mason more than words can express and I Pray he can get a new heart so we can cuddle for many more years to come.
PS....the good news of the day.....I should have put this at the top of the post...even with all his vomiting lately and not eating much orally......Mason put on another 7 oz! On Monday he weighed 17 lbs 2 oz! Yay for the G-tube!!!