Friday, November 13, 2009

The Latest and Greatest

This is exhausted Mason after a LONG night!

I will start with the latest update on Mason.

He is still struggling with a horrible cough!

On Sat., Sun., and Mon. nights it definitely sounded like croup. That tight, seal-like bark, very scary cough that put Mason and I outside several times during the night so he could breath in some nice cool air (to open up his airways). And thank goodness from our pediatrician Dr. W who now lives in my neighborhood (good for us, bad for him!!!), Sunday morning he brought Mason a dose of decatron (sp?). The one time med that helps loosen up the tight airways caused by croup. It seemed to help, because by Tuesday his cough was starting to sound much looser, but junky.

Now, its not that scary croup cough, but he's throwing up a lot because he gags on all the junk he's trying to cough up! Poor little guy! I hate seeing him throw up and especially when it comes back up through his nose (sorry if that's too descriptive). He screams, cuz I'm sure it burns horribly :( !!! Then yesterday , continuing and through last night and today, his oxygen sats have been dropping (from 80% where he is supposed to be to 60-65%) so I've had to up his O2 from 1/2 liter to 1 1/2 liters. His energy level is down and he is not his happy self. He coughed and puked all night! I pray that he can get over this ASAP.

I am sad he is sick.

I am scared and worried.
If the junk gets into his one good lung that would be

I am tired.

Mason is tired.

But, he will get better soon so we can go visit Stanford!

That leads to the
greatest news of the week.....I got a call on Tuesday from Stanford's heart transplant coordinator. She said that Dr. Rosenthall, their heart failure/transplant cardiologist, feels that Mason will probably be a candidate for just a heart transplant to his own healthy lung (just like CHOP's offer)! He doesn't want to give his final opinion until Mason has had a Chest CT (cat scan) to get a good view of his obstructed pulmonary veins and has come to Stanford for an evaluation. He would like to meet Mason and talk with us in person.

I have been working out the details the last couple of days. The
evaluation will take 2-3 full days of different appointments. As soon as I have the CT scheduled at Primary's then we will get a more definite date for Stanford. We will probably go sometime in the next 3 weeks.

I am so grateful for this news. Now that CHOP and Stanford are thinking along the same lines (and they are the 2 top rated pediatric cardiac transplant hospitals) I feel this will help us in our decision about what will be best for
Miracle Mason.

Mason needs a bath and some I will update more later as I get any new info. Thank you for all your prayers, support, & concern. I know
every prayer counts and helps our journey at this time!

p.s. A huge "Thank you" to a very special friend who sent some cleaning ladies over to rescue me
this week! (Again!!!)


Hope's Blog said...

I am so happy to hear that Stanford and CHOP are on the same page. That is great news. I know it is hard to see him so sick, but I will keep him in my prayers to get better really soon.

Kaidence's Mommy said...

GREAT NEWS!!!!! I am so excited. Isn't HOPE the greatest thing ever? We will pray for a speedy recovery for little Mason and no more pukies. We love you Mason! Little Miss K sends Hugs and Kisses (germ free of course) back your way!

The Simmons Family said...

OH Summer, I am SO excited that you will be seeing Dr Rosenthal!!!! He is so wonderful, kind and such an intelligent man!! Owen sure does LOVE him!

If you want to know anything about the area or appointments, email me! Each cardiology appointment has taken us like 5 hours, so PLAN for long days at the hospital!

I am PRAYING that everything goes well with CT, that Mason will get the junk out of his chest and he will be back to his HAPPY self!

I am seriously so excited about the HOPE that has come from CHOP and Stanford! We continue to PRAY!


cici said...

Poor little guy. My son had that croupy cough a while ago. I sounds so scary, especially in the night.
Does he have a humidifier in his room?
I am so exited about Stanford. It is not far from where I live and has performed many miracles.
I will not stop praying until your sweet little boy is healed.

Kimmie said...

I am so HAPPY about the Stanford news!!!!! I've been thinkin' about Mason a lot!

Jamie said...

I'm sorry he's got that cough, but SO happy for your news from Stanford! It's about time! We'll still keep you all in our prayers!

Jana said...

That is awesome news! I am so unbelievably happy for you...but also a little sad that we won't be seeing you in Philadelphia! Congratulations...this just made my week.

Kyle and Alli said...

HOORAY!!! This is the best thing I have heard all WEEK! Now Mason, cough up all of the junk and keep it out of your lung ok??? Summer, I had to laugh...what a blessing to have your pediatrician as a neighbor!! I hope he loves Mason as much as we all do! :)

Rachel Lund said...

Yay! Hope all continues to go well with Stanford! Looks like Mason is ready to try out a new "hotel!" Best Wishes and our prayers!

Cason Clan said...

We are so excited for the latest news!!! Hope all goes well at Stanford. It's nice to get some hope in our lives. Every victory for these heart kids is a victory for all heart kids. Sorry that he is sick, I hope he gets feeling better.

Ellie's mom, Becca

Jennifer said...

Praying for Mason to get better FAST...

Anonymous said...

Do you need a place to stay in California? We used to live there and we know wonderful people in the ward there with plenty of room for you and they are close to the hospital. (I delivered my little girl at Lucille Packard) Here is my e-mail if you need a place to stay-
My name is Lauren Bayly. Thanks!

Staci said...

I will be anxious to hear what Stanford and CHOP say after the chest CT. I will keep you and your sweet boy in my prayers.

Staci (angel Bridger's mom)

Angies Support Team said...

My name is Angela and I was going through heart blogs. When i was a baby I had to have a open heart surgery. there was alot wrong. 16 years later, I was diagnosed with restrictive cardiomyopathy. It was SO scary to hear that I needed a heart transplant and a possible lung transplant. In August I was healed. Thank you Jesus!!! Anyway I could not help but to just cry when I read your page. I think it's amazing that you are trusting in God. He has AMAZING plans with you and your family!!! I can just tell! When I was diagnosed, I found a great verse. Please allow me to share it. It's Psalm 73:26 "My flesh and My heart may fail, but God is the strength of my heart and my portion FOREVER." What is happened to your son does not surprise God. He has planned this for your family! And remember He will not give you more than you can handle. I will keep your beautiful family in my prayers and tell my parents about you guys. :] Thank you for letting us read about your hard time. :]