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 bad.

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 snuggling....so 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!!!)