Thursday, August 20, 2009

Moving Forward

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, 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!!!


Lolly Sneed said...

Summer, I love you and am praying for you and Mason and your whole, sweet family. Having lost Ryan, all I can tell you, is that you just have to put your trust in the Lord and accept his plan. You are a strong woman and with his love you WILL get through this and what ever else he puts in your path. Love Lolly

The Simmons Family said...

You are doing amazing!! Sounds like both our guys had same ol' echo results. The Carvedilol and increased meds haven't worked on Owen either.

I pray that Mason doesn't have an antibody issue. Owen's are 98% and it definetly complicates things. I have known many HLHS kiddos, with the donor patch, and their antibodies were almost zero.

It's going to be a rollercoaster ride to transplant, but it's nothing you can't handle. Think about how much Mason will thrive with a new, perfect heart!!! That's what keeps me going.

Hang in there.


joycesharp said...

We are praying for you and especially for little Mason. Please know that we think of you often even though we hardly ever see one another.

Stephanie said...

I'm so sorry, Summer. What a trial for Mason and your family. We will definitely pray for you guys and hope it all works out. Hang in there.

Cassie and Chad said...

Oh Summer my heart aches for you and your sweet family. I hope and pray that everything goes well for Mason. What a special little boy to have in your family. Your a good mom! Please know that you are always on my mind. I would love to help out in anyway. Love you guys!

Marci said...

Summer, thanks for keeping us updated. Lately I have been tearing up reading your latest entries. You are amazingly strong. Mason (and your other sweet kids) are so lucky that you're their mom.

Kyle and Alli said...

Wow. That all happened very quickly. We will continue to pray for Mr. Mason and hope that you all can keep your heads straight with all of the new information.

The G Fam said...

Wow! What a HUGE step and so overwhelming. We are praying for your family, that Mason will be able to get a heart. Hang in there, and trust in those moments of peace!
heart hugs,
the Gourleys

♥ Michele ♥ said...

Let's pray for good results on the antibody test and pray for some peace for your family! Please call me if you ever need a shoulder to cry on because I know what you are going through! Always thinking about you and your Miracle Mason....I think he has a few more miracles up his sleeve!

cici said...

Your posts are always so heartfelt and honest. I can feel your pain and emotions and I want to reach out and hug you. This must be one of the hardest things to go through as a mom and I am going to pray for strength for you and your baby boy.. Rest well tonight knowing little Mason is surrounded in Prayer
and love.

Ingram Family said...

You can add our families thoughts & prayers for everyone in your family. We hope for more miracles to come your way!

The INCREDIBLE Pettit's said...

Your family is in my thoughts and prayers...praying for another miracle, these boys are very tricky! Sometimes I wish they could talk to us to let us in on their and Heaavenly Fathers plan for their life, but I think it's best that we don't know, it definately adds to my faith. Let us know if we can do anything.
P.S. I think we know a couple of people in your neighborhood.