Friday, October 9, 2009

Finally, a bit of good news!

(This was one of the cute pictures taken by
Blue Lily in June. Mason was 18 months old)


On Monday (Oct 5), Mason had a cardiology check-up and ECHO. For the first time since April we we finally received some good news! Mason's ECHO showed some improvement in his heart function!! When Dr. Everett told me this my eyes instantly filled with tears. It was so wonderful and comforting to have tears of joy instead of tears of fear and heart break. Although, Dr. E did continue to say, "not normal, but better" .....this news still brought me a spark of happiness and hope. Okay, so this doesn't solve his left pulmonary vein problem or his incapability to receive a heart transplant, but at least seems to offer sweet Mason a small improvement in his quality of life for the time being. He has seemed stronger and has needed less O2's so this news definitely seemed to make sense.

It is speculated that all his heart failure meds are finally helping. I also know that because of so many prayers and fasting on Mason's behalf, our wonderful Father in Heaven has extended his hand once again to help our Miracle Mason at this time. This is a true reminder to me to keep faith and hope in the power of prayer and in the belief that 'miracles happen'. This may be small in the perspective of his whole prognosis, but even small improvements and tiny bits of good news lead to increased hope!

Mason also continues to gain weight, thanks to his G-tube. He he has gained 3 lbs since mid July when he got his g-tube. He is 19 lbs now! This is huge for Mason. It does make me sad though that most of his food/ calories he gets through his G-tube now, because he refuses food most of the time. He once was a very good eater and his heart failure has taken away his desire to eat. But, on the bright side, at least we had the g-tube put in when we did.

THE WAITING GAME
We are still waiting to here from most of the hospitals that have received Mason's medical history. His info was sent out to for their opinions on a Heart-Lung Transplant:
St Louis Children's Hospital, Children’s Hospital of Pittsburgh, CHOP- The Children's Hospital of Philadelphia, University of Florida at Gainsville , Natonwide Children’s Hospital Heart Center in Ohio,
John Hopkins Hospital in DC, Texas Children’s Hospital in Houston, and Lucille Packard Children's Hospital at Stanford, and Cook's Children's in Ft. Worth,Texas (Cook's doesn't do Heart-Lung, but they have a doctor who specializes in PVS -pulmonary vein stenosis).

So far we did hear a definite answer from only two of these. Both Nationwide and Pittsburgh said that Mason is too high risk for a Heart-Lung Transplant due to his Level II antibodies being too high. His Level I are 0%, but his Level II are 95%. For just a heart transplant that is okay, but lung transplants have a much higher risk of rejection. Although, on a more positive note, we have heard from Texas Children's and CHOP, not with a final answer or opinion, but they both are presenting at their care conferences to their medical board, the possibility to do just a heart transplant to his right lung which is healthy and has good pulmonary veins. I'm trying not to get my hopes too high, but we didn't even know this was a possibility. So needless to say, it is definitely a ray of hope and sunshine upon the dark, sad news I have been dealing with for the last 5 weeks!



Thank you to so many for the donations to Mason's medical fund. This is so kind and so greatly appreciated. I am so amazed at the extreme kindness from people we do not even know! All of the donations and money made at his fundraisers will go to help with medicine and medical bills. Thank you, thank you, thank you!!!


We hope to see you at Miles for Mason tomorrow! Also, I will post the flier for the November 5th dinner in a couple days.



(Family Picture by Blue Lily in June)

10 comments:

Rachelle said...

What a Tender Mercy! These are the kind of Tender Mercies that keep us going! I am so happy for you guys and Mason. Also, I love the pictures! They are beautiful! I need your address if you get a sec. to email it to me! :)

The Simmons Family said...

SO much great news!! I am so happy!! Waiting is the worst, but I pray that there are more miracles for him.

Keep us posted! :)

Jennifer said...

I came to your blog from Paul's...

That little Mason is a cutie...and only a couple months younger than my little boy.

My awareness of "heart babies" has grown leaps and bounds since my best friends little girl was diagnosed with HRHS when she was 20+ weeks pregnant. Kaiya passed away when she was 2 weeks old. Being on this jouney with her mommy has made me WANT to HEAR the sad heart breaking stories that are so easy to ignore because really...it's every parent's worst night mare. I know that there is pretty much nothing I can do but pray....but it's SOMETHING I can do.

So glad to hear you've gotten some Positive news back from the doctors!

Also...on a totally unrelated note...I love your family picture! :)

Jana said...

Thanks so much for the update. The pictures are gorgeous!

Paul Cardall said...

That's great news! You guys are awesome. We'll keep spreading the word to pray for Mason.

At our Whitt's End said...

Love the pictures! So glad that you have some good news! Love to all!

Marnie

Mindi D said...

That is such great news! I would love to come to the dinner on the 5th, i hope you don't mind total strangers?? I am going to try really hard to be there. You're family is so adorable, i LOVE LOVE the picture of you all looking at him like he is your rock. That's how i feel about these little ones, they make me stronger :) :) Good luck!

Kyle and Alli said...

Wow. What excellent news all around! I am thrilled for you guys! I also love those sweet family photos. Truly priceless!

Ryan and Hilary said...

"By small simple things great things come to pass" I am so so happy that you recieved good news. It is those little tender mercies that help us along this journey with our heart babies. I know with every fiber of my being that Daxton is here because of the faith, prayers and fasting of so many. We will continue to pray and fast for your little man. Miracles do happen and will!! Much love, Hilary Cook

♥ Michele ♥ said...

I love the family photos! We fasted as a family for you today. We think of you all the time!!

We love you!