Never in the Safe Zone

I guess once we start feeling like things are going good and we are somewhat "safe" for a minute they decide to worry us about something else. They called us back last week about the random vessel in his heart and they are not concerned about it right now but they didn't mention what they were thinking about Mason's chest xray being more wet, so yesterday on our way to Ryder's soccer I got a phone call from the nurse, she told me that Mason's doctor is very worried Mason has something called Chylothorax (click here for definition). It is fairly rare but pretty serious, but they way it is presenting itself he really feels it might be. The way they are going to find out for sure if that is what it is they are going to switch his formula. The formula he is on right now is a fat malabsorbtion formula so it makes it hard because the only way they can see if that is the problem he needs to be on something that isn't fat free. The dietician will call us today and tell us what formula we need to give him, then we will go down to Primary's 2-3 days after being on the regular formula and they will do a chest xray and if it is even more wet then it will look like we will become part time residents of Primary Childrens once again. I am nervous being so far away from there when they do this trial because if it gets bad enough it could put him in respiratory distress and I really don't want to watch him leave on life flight again. But I guess we will just see how it goes. This is life as we know it. Our life will always be unpredictable and anything can happen at anytime. So I guess it is pretty safe to say we are never really technically in the "safe zone" But we love this little guy more than words can ever express, he is so fun and his personality is the best! I can't imagine life without him, he has made us stronger and continues to teach us life lessons. Thanks to everyone who still checks up on him and still prays for him, we really appretiate it! ♥

Sedated Echo Appointment

♥ Yesterday was Mason's sedated Echo appointment at Primary's and boy was it a LONG day! We checked in at 11:50am and went straight to chest xray to check on that fluid that was there last month and to make sure the increased Lasix got rid of it then we went back to his room in the cardiology clinic to get prepped for his echo. The nurse came in and did his assesment and then called the IV team to put in an IV for his sedation meds. They put them in what they called moderate sedation. Obviously Mason didn't love the IV team but they got his IV without a problem which always makes for a happy mom! Then they took us back to the echo room where they gave him 3 sedatives, Ketamine, Versed, and Nubain. Those knocked Mason right out! The echo lasted about an hour and went very smooth! Mason didn't move the entire time which is great because with him being on those meds before they can develop a tolerance to them so they don't work as well. After it was over we had to go up to the surgery post op for him to wake up. We had to be there until he woke up and could eat something and keep it down. While he was waking up I requested for them to turn off his oxygen and do a trial to see how he held it on his own. They turned it off at 2:25 and at 2:55 when we got discharged from there his oxgen still was good! YAY HE PASSED!!!! After all that we headed back down to cardiology to find out the results of the xray and the echo. I had been nervous all day well actually to be honest I have been nervous since they said the words possible heart failure. They were so behind that we didnt see the doctor for and hour and a half! He started with the echo, NO SIGN OF FAILURE!!! But they saw something they hadn't seen before, they found a small vessel in his heart that is in a place where there isn't supposed to be a vessel, 3 different doctors looked at it and couldn't figure it out so that has got them kind of confused, Mason's cardiologist wasn't there today and he has done a heart cath on Mason so the cardiologist that we saw is going to talk to his doctor about it hopefully today. Then the chest xray.... it was more wet, another confusing thing because he looks good he sounds good and he passed his oxygen so that is another thing he will discuss with Mason's doctor. Everything else was good his EKG was good and they were pleased with the way Mason looks. So all in all it was a very good appointment just now the waiting on the unknown of what's going on. Before I could take Mason off his oxygen they wanted me to do a trial at home this morning and he also passed here! So he is offically off oxygen in the day! YAY! He has been on it for 4 months, and I know that isn't that long compared to other kids like Mason but I'm glad he is strong enough to not have it anymore! Although now I'm a little nervous and he will prob get spot checked alot for the next week. I am so proud of him he continues to be such a little fighter! We love him so much! ♥

First offical Oxygen Free picture!

His goal range is still between 75% and 85% and it was 83% at the end of his trial this morning so just where we want it!

Welcome to Holland

I read this poem for the first time when we were in the hospital with Mason the first time and felt it was so dead on and the more time goes on the more I feel it is true. I've been thinking of one of my good friends who is going through a hard time with her baby right now and this poem kept coming to mind so needless to say I sent it to her and am going to post it on here for me and for all you other moms going through hard times regaurdless of what it is, just remember to stop and look at the things you have been blessed with through the hard times.

WELCOME TO HOLLAND

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this… When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” ” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely hings …about Holland.

6 Month Milestone!

Mason hit his very exciting 6 month birthday yesterday!! I remember being sad with Ryder when he turned 6 months because he was growing so fast but with Mason I was so excited because that means he is still here, so keep on growing buddy! He is such a sunshine in our life he can make any of us happy at the drop of a hat. His eyes and smile melt my heart every second of everyday! Mason we love you and keep fighting, we are here to fight with you!

WE LOVE YOU MASON BOO BEAR!!

Sitting like a big boy in his Bumpo

Handsome Boy

Brothers!

Holding his toes

Things Mason likes and can do at 6 months old

-He loves his brother still!

-He likes to suck on his fingers

-He is interseted in our dog

-He is a squealer!

-He is very ticklish

-He likes to suck on his toes

-He can hold his head up while on his belly for a few seconds

-He can roll from Belly to Back

-He can roll side to side

-He likes us to do patty cakes with his hands