Thursday, April 29, 2010


I'm sorry to many of you who probably checked the blog yesterday for a new post! I had been holding off, because the docs thought they would get the DSA (donor specific antigens) / antibody level results late last night. I figured I would wait and post with the news about those results and our next game plan of action. BUT.....they never got them and then I was tooooo tired to post at midnight!! And still NO results this morning!

Mason continues to do well with his heart function, blood pressure, no supplemental O2, and clesr lungs! Yay!! I love seeing his great progress after such a huge set back! Mason's strength and courage will always and forever amaze me!!!

Poor little man is extremely exhausted though.

Today marks FOUR weeks of being at the hospital and not getting anything close to the sleep a 2 1/2 year old really needs.

Sunday will mark FOUR weeks from Mason's Angel heart birthday, but remember the week prior to that Mason had a routine cath on Thursday, stayed the night in the CVICU, went home Friday afternoon for a few hours, had his mini stroke, went right back to the hospital through the Emergency Room, admitted to the CVICU to be watched for the weekend, and then Saturday night got word that his new heart was coming!

A long, tiring FOUR weeks but..............a very special, faith stregthening, prayer answering, hope fulfilling, definitely priceless FOUR weeks! I'm grateful my Heavenly Father has allowed me to be on this wonderful journey with Miracle Mason.

Needless to say Mason doesn't quite understand why he is still in this place that is not home, nor why I just won't put him in his stroller, pack us up, and get of here!! He's been tired and cranky the last couple of days, but I certainly don't blame him. We are watching him closely to make sure it is just "being done" with this place and not the beginnings of an infection or a return of that awful "R" word.

Got to go cheer my baby up, AND Mark and Braiden just arrived to visit us, thanks to an amazing Mason Fan and dear friend who purchased their flights with her Delta Sky Miles. (Thanks Jamie & family)

Thanks for all of your prayers over the last TEN weeks and TWO days since Mason and I left our family in Utah to start this next chapter of our journey. Today, I am especially grateful for how profoundly your prayers have touched Mason and our family during our roller coaster ride these last FOUR weeks. We love you!!

I will update later with the antibody results.


cici said...

Poor little guy. I love the way hospitals come in to poke and prod in the middle of the night too.
Just the noise alone would make anyone grumpy. Sounds like a good sign he is bored and wants to bust outta there ;)to play with the vacuum ;)

Jamie said...

You're welcome Summer. I'm so glad I could do that for you :) I hope you have a wonderful weekend with your visitors!!!!

Mindi D said...

I can't believe YOU have been there for 4 weeks! I couldn't do it, you are such an amazing person, i hope to meet one day :) I'm happy your family is there to see you, thank you Jamie for making that happen!!!

Emily@Little Forever Family said...

It is so hard when they do not understand. It is difficult when they look to you to take away the pain, and the look they give makes you feel like you are the one that could take it away but yet you can not. I would want to get the hey out of there. I cannot wait for you guys to get home and be home, and for appointments to be further and further apart, to where Mason gets to finally be just a normal kid with a very special heart. What amazing friends. Friends and family are a tremendous blessing. Thanks for the all the updates Summer, we are cheering you guys along!!!

mandy said...

I read you journey along with hundreds or others, and everyday i find myself rooting for Mason and wanting to know how he's doing. thanks for keeping this blog. As a mother of an HLHSer (and 4 others) I think that at some point we might be in your shoes. The way with which you've handled these situations has been amazing to me. The Lord knew what he was doing when he sent Mason to you! Thank you Summer.