Thursday, October 1, 2009

Happy 22 months Sweet Miracle Mason!

Dear Mason, we are so blessed to have you in our family. Happy 22 months (on Sept.30th)! You are a true miracle!

Mason wants the camera every time I try to take a picture.

Mason has worn oxygen for 6 months now! I almost forgot
how adorable his cute little face is without it! This was
after a bath. He needed new stickers and a new cannula.

One night Mason decided he liked pizza! We were so excited.
But he hasn't liked it since, it just it ends up on the floor. Darn!

This is Mason's very favorite toy! (Thank you Muaina Family!)

Mason loves to brush his hair. And notice he is sitting
in a pyrex dish. He still puts his little bum in or on
whatever he can find and scoots around the house.

Helping big brother fold laundry is always fun, because
then he gets pushed around the house in the bucket.

Mason has so much fun scooting down the stairs!
(Well ,except for when he fell and pulled out his G-tube!)

Kaitlin, Mason's big sister turned 11 this month.
Happy Birthday!!!

Too bad ice doesn't have calories because he loves to chew ice!

He enjoys riding this rocking horse and once you put
him on it, he does not want to get off.

Mason has figured out how to get up the 2 steps from
the family room into the kitchen. Way to go!

What can I say? He is Mister Happy all the time!

At least he's always got his on toys on had at all times.
O2 cords!

Mason is really into dumping toys out of their container
and then putting them back in. And look at him
tangled in his O2 cords and not bothered by it at all.

Braiden and Mason have matching shirts so Braiden
coordinated their outfits and wanted their picture taken.
Oh how Mason's siblings adore him!!!

Mason Update:
On September 18th, 2 weeks after the heart-breaking news of Mason's 'pre-transplant' heart cath, we went to Primary's and met Dr. Kouretas (Mason's Heart Surgeon) and Dr. Everett (Mason's Heart Failure Cardiologist). Mark and I felt like it was important to ask for this meeting to hear Dr. K's thoughts on Mason's cath lab results, as well as his opinion on Mason's prognosis. Dr. E had also pulled up all Mason's past Operating Room reports, sedated echos, cath lab report before the Glenn.......basically anything that would give her and Dr. K a look at his pulmonary veins that have caused us this huge obstacle.

I thought that waiting 2 weeks was long enough for me to get through this meeting without crying, but I didn't get 3 words out without crying. Good thing there was a few boxes of kleenex in the room to get me through the meeting. Mark ended up getting called out of town on business so I was the only one there asking the docs all our questions.

Dr. K expressed his sadness for us. He also expressed how difficult it is for him and his team when they have a case like Mason's when they can no longer palliate or correct his heart disease surgically. He did agree with us on seeking more information and opinions on a heart-lung transplant for Mason. He was not very optimistic about it, because he said they are very high risk, but said seeking these opinions will help guide us in a decision. I even asked him what he would do if this was his child (Dr. E had already told me the day of the Cath she would never put her child through this type of transplant). He said he'd like to say he wouldn't because of the statistics, but said he truthfully couldn't answer that because he's not in our shoes. This made me feel better, knowing he understands when your own loved one is involved it would be very difficult not to keep fighting.

I asked if his PVS (pulmonary vein stenosis) was something we could have seen sooner , in time to have corrected it or listed for a heart sooner before his 2 veins were completely obstructed. As they both reviewed all the above mentioned reports, they noticed that his lower left P vein had probably been diseased and narrowed since birth. During his first open heart surgery at 10 days old, the OR reports show turbulent blood flow in that vein. So that one has probably continued to narrow over time, just part of his heart disease. They wouldn't have done anything to correct it or list for a heart because it is ok to have 1 of your 4 PV's not working. ( There are 2 on each side of the heart going to each lung).

As for the other left PV that closed off, it had been fine even in his heart cath before the Glenn (his 2nd open heart surgery at 6 months old).....but speculation is that a blood clot may have narrowed it and eventually closed it off. This is very possible because Mason had a blood clot in his SVC (superior vena cava) since 1 month old that we treated with shots everyday. It was there still at his pre-Glenn cath. but 2 weeks later when his Glenn was performed it was not there anymore. Dr. K had planned on removing the clot during the surgery, but had reported to us it was not there! I'm not clear on why the OR report at that time would not have shown an obstruction or narrowing in that upper left P vein if this is the case.?? They believe that the upper vein may be diseased just like the lower one, so if a clot did get caught in there and began to narrow just was not strong enough to stay open. The questions I asked that day seemed to create more questions in my mind!

Although you can always continue to say "what if?"......and "how come"....... I'd rather just take what the situation is now and GO FORWARD WITH FAITH.

We did have Mason's info sent out to 7 different Children's Hospitals so we should start hearing back next week! Oh how I'm praying for optimistic opinions! Dr. K did also offer to sit down with us when we get all the opinions back and go over them with us. He wants to help us understand the other hospitals' answers and help guide our decision if we we would like. As for Mason's prognosis, something I try very hard each day not to think about, both Dr. E and Dr. K say its hard to know..... but that his months with us are probably numbered. Unless of course there are still more Miracles in store for our Miracle Mason!!!!

A big thank you from our family goes out to all of you for your concern, kind messages, amazing acts of service (meals, house cleaning, help with laundry, help with homework, yard work, planning of fundraiser, donations....and much much more) and most importantly your prayers on our behalf. This has been a very hard month emotionally for me. I couldn't do it with out all of your support! Thank you, thank you!!

For now, I will continue to enjoy every minute I have with my precious little boy! I will never complain again about sleepless nights, for now it just means more time with my Miracle Mason!


Amy said...

What darling pictures. What a nightmare the g-tube incident must have been!

After reading your earlier updates, we had a bunch of the same questions as you presented to the doctors, so thank you for this latest update with the details about Mason's condition. I'm glad that you were able to get answers to your questions from the doctors. Best wishes with all the second opinions from the other children's hospitals. Your family and Mason remain in our thoughts and prayers.

Amy, mom to Daniel 27 mos (HLHS), and family, Pennsylvania

Brooks said...

Thank you for sharing this incredible journey with us. We remember Mason in our prayers & we're looking forward to the fundraiser on Saturday. You guy are such an inspiration. You have such faith & trust. I don't know how you do it! Hang in there. The pictures of Mason are darling!! Brooks & Mike Wynn

The Simmons Family said...

Summer, we are PRAYING for some great news from another hospital. I love all the pictures of Mason. He feels like my own since him and Owen are so alike. The ice muchin', pizza lovin (once in a while), butt scootin, oxygen wearin, camera reachin, blue eyed boys!

We are PRAYING for more miracles!


cici said...

Happy 22 months Sweetheart!

I put Mason in the Prayer intention book at Church. He will have many wonderful people praying for him. I
truly believe in Miracles and I pray you will witness one very soon.
Big Birthday hug :)

likeschocolate said...

He sure is a cutie!

Hollie said...

He is so cute! I am so overwhelmed with emotion every time I think about you. You are such an inspiration, and I pray daily that you will have the strength you need to help you through this trial in your life, no matter the outcome. I hope and pray that you are able to get some good news from one of the other hospitals that you sent Mason's information to. He truly is a miracle and such a blessing to so many people. Please let me know if there is anything I can ever do, you are in my prayers!
Hollie, Ben and Elaina

Jessy and Kurt Antonino!!!! said...

Hi My name is Jessy and I leave in Utah, I read your story about little Mason, and my tears are non stopping, as a mom of 2 boys I have to tell you that what are you doing for little Mason is amaizing, NEVER GIVE UP!!! all is going to be okay. You are an amaaizing mom, and no matter what happens Mason is always going to be thankful of your fight for him to feel bettet, he is always going to be your angel. Eventhough i don't know you I feel your pain and ALL my prayers are for little Mason and your family, Hope for a Miracle!!! Be strong eventhough in this painful path.

Moffitt Fam said...

Hi My name is Jamie and I am from Saratoga Springs. I also have 5 children and my little Tyler was born in March with hlhs. I came across your blog through Paul Cardall's blog. I am so sadden to hear about Mason and the problems you are facing. I will keep him in my prayers and hope that our Lord has a miracle waiting for Mason!!

Ryan and Hilary said...

I was so happy to meet you and sweet Mason on Monday. I am so grateful to put faces to the names. You are so strong and faithful. We will most definatly keep your sweet family in our prayers. We will be praying for many more miracles to go your way. Much love, Hilary Cook-Daxton's mommy
"Expect Miracles!"

tammymiller said...

Mark & Summer,

your family is truly an inspiration to us. Your faith and courage in the midst of your greatest trial is truly inspiring. We pray for your family all the time and hope that Mason will be okay.

Love you guys!!